I Wish I Had the College Diabetes Network When I Was In School


Editor’s Note: In 2022, the College Diabetes Network rebranded to become The Diabetes Link, expanding their resources beyond college attendees to all young adults living with any type of diabetes.

I had dreamed since I was 8 years old of becoming a fashion designer. In high school I focused on my art and fashion and it eventually led me to my dream school—Parsons School of Design in New York City. The Big Apple!

As the only person with type 1 diabetes in my elementary, middle and high school, I was used to being quiet about it and not talking about it. Because I didn’t have a type 1 community in high school, I didn’t even think about trying to create a community for myself.  When I went to college I had no idea that The Diabetes Link (formerly known as the College Diabetes Network) even existed!

As I prepared to embark on my new journey, all I really did was make sure I had my diabetes supplies. Of course, I didn’t realize how much space diabetes supplies take up in a dorm room about the size of a postage stamp with two girls crammed into it. I had to sacrifice valuable clothing space (hey, a girl’s gotta look good for fashion school)!  for pump supplies and test strips. Luckily I was able to get a small fridge, but in order for my roommate to sit at her desk, we had to move the fridge to the center of the room. It was a little ridiculous.

1613850_10203649028844869_4464016537694808596_nVery quickly I requested a room change, solely based on the fact that I simply needed more space for my stuff. I didn’t realize how much space a three-month supply of pump sites, Dexcom, emergency glucagon, insulin syringes and glucose meters would take up. Had I had a community to support me, I would have known to request a bigger room right off the bat for more storage space.

I told most of my teachers about my diabetes, but always made sure to tell them how much it would not affect me and my studies. And I didn’t let it. Sure, I would be working at 2am on finishing a dress with a blood sugar of 400 since I was so stressed, but not turning in work was never an option. For those wondering, art school is not the fluffy life it sounds like—they work us hard and usually mercilessly. We had a saying at Parsons—you get hit by a bus, you come to class on crutches. So I was uncomfortable talking about my disease. I simply suffered through and did the work. I didn’t know I could go to my teachers and explain I was having a low blood sugar and that’s why I couldn’t finish my work. I worked through my diabetes and I suffered because of it.

Another thing: disabilities services. I think I might have registered once with disability services? But I also didn’t like to think I had a “disability”. My advice now is to own it! We have to deal with this crappy disease, so if you have the chance to register for special services and get perks like registering early for classes, take it! It’s like using a disability pass at Disneyland so you can skip the long lines. It’s a silver lining of diabetes! It’s also beneficial since if you do have to miss a test because of a low blood sugar or you can’t get to class because you have ketones and are throwing up, you are already registered with the school and they can help you avoid any issues you may have with a teacher not understanding your disease.

Mary2Going to college is a big deal. It’s full of emotions that can change on a dime— stress, dealing with homesickness for probably the first time, the joy of experiencing a new place. It can affect your blood sugars, and having peers to talk to about it makes all the difference in the world. Even if it’s just one other diabetic.

Our disease has a tendency to make us feel alone, and I know had just one other diabetic reached out to me I would have felt an incredible relief and sense of joy. The power of community is huge, from providing resources and tips on how to deal with school to providing emotional support that we sometimes don’t even know is needed. I have seen the community work this way and have experienced it myself. Working at Beyond Type 1 has lit such a fire under me to do a great job managing myself, no matter how difficult. The community has provided me with a safety net and allowed me to feel comfortable with my diabetes. I wish I could have had that in college, I know it would have helped.

Reach out to your fellow type 1s. Sure, it can be hard to find each other at first, but the power of social media is huge! If your school has a chapter, get involved! If it doesn’t, start one! Don’t be ashamed about being a diabetic—embrace it, celebrate it and live your best college life. Don’t do what I did and just muscle through — you as a diabetic can thrive, not just survive, in college!

You can also connect with other type 1s every day on the Beyond Type 1 App.

WRITTEN BY Mary Lucas, POSTED 11/11/15, UPDATED 10/18/22

Mary was diagnosed with type 1 in 1998 at the age of seven and has been active in the type 1 community ever since. A dedicated philanthropist, Mary and her family have raised over $15 million for type 1 diabetes efforts. She started at Beyond Type 1 in July 2015 as the community manager, and became head of Influencer Engagement in September 2018. In her role, Mary loves connecting our ambassadors and influencers to our programs and efforts. She also oversees the Global Ambassador Council, working with each member on projects and initiatives. She has run the 2017 + 2018 TCS New York City Marathon with Beyond Type Run, raising over $16K. Mary attended Parsons the New School for Design in New York where she studied fashion design with a focus in Childrenswear, and studied abroad at Central Saint Martins College of Art and Design. Prior to Beyond Type 1, Mary was a freelance designer and photographer, working most notably with Myabetic and Refinery29. She has also worked at Women’s Wear Daily, Fashionista and Mel Ottenberg Studio. She is passionate about living well with T1D, finding a cure, growing Beyond Type 1, and her French Bulldog Lola! Check out more from Mary on her instagram @MaryAlessandraa