Creating Connections & Feeling Understood-CDN Retreat 2018 Recap

Caroline Minor, President of the University of Arkansas at Fayetteville CDN Chapter, Class OF 2019

Caroline kayaking with friends

 

There I was, sitting between two strangers in the middle row of a van packed to the roof with eight other students, their bags, and low snacks. We were on our way to a cabin in the woods of Maine for the CDN Annual Leadership Retreat. I think the exact words running through my mind were, “What the heck am I doing?”.

We were going on our tenth minute of excruciatingly awkward silence when a Dexcom alarm started blaring. My stomach dropped and my hand darted straight for my phone, like it always does when my Dexcom goes off in public, but when I pulled up the Dexcom app, it wasn’t mine that had gone off. A girl piped up from the back – “Sorry, that was me!” – and we all busted out in laugher.

That was the first time in my nine years of living with T1D that I had ever heard a Dexcom alarm that wasn’t mine. I was sitting in a van full of strangers, but suddenly, they didn’t seem so strange, and diabetes didn’t seem so strange. In that second, I realized it was going to be a good week.

 

Caroline at the lake

 

And it was. It changed the way I think about diabetes and myself as a diabetic. A little background about me: I was diagnosed with T1D when I was eleven – a stage in my life when I was inclined to think I was WAY too cool for diabetes camp or JDRF events. So instead of finding a community to help me through the inevitable struggles of living with T1D, I lived silently, trying to feel as normal as possible. Flash forward eight years. As a sophomore in college, I was miserable. My blood sugars were constantly all over the place, I was dealing with the symptoms related to those swings, and none of my friends or parents understood. I started to resent my friends for not being able to relate to something that I dealt with every minute of every day. Diabetes started to expand out of the “disease” box we put it in and started to affect my relationships, and even scarier, my mental health.

Those feelings were the motivating factor that pushed me to start my Chapter of CDN at the University of Arkansas, and I’m so glad I did, because now I understand that every other T1D my age feels the exact same way. Diabetes is isolating. The Annual Retreat gave 25 of us the opportunity to come together and realize that we’re not as alone as we think.

We spent the week talking – talking to each other, to pharmaceutical reps and diabetes device and therapy companies, and to the CDN staff. We learned about advancements coming to insulin therapy, pump therapy, and everything in between. The most motivating thing for me was hearing about advocacy and working to fill the many gaps in the health care system for T1Ds. Our conversations about mediocre (to say the least) insurance coverage, apathetic doctors, and dangerous stigmas got the wheels in my head turning, and I left the retreat angry and ready to change things.

It’s incredible that in five days of talking about T1D, we barely mentioned finding a cure. That’s not what this retreat was about – we, as a collective group, were all on the same page that we’re not waiting around for a new medicine to make us new people. We don’t NEED pancreases. We’re strong enough without them. CDN acknowledges and celebrates THAT – that collective sense that we are worthy of empowerment as people with useless pancreases.

I’ve always felt like I was missing something, but I didn’t realize it was an entire community that was intent on starting a movement to change type 1 diabetes forever. For anyone questioning whether or not they should take that leap and apply for the retreat: do it. I walked away with a new community, but also something else I didn’t expect – a passion for type 1.