Editor's note: this blog was originally posted on Jesse's blog, where he wrote about his experiences with Bike Beyond this summer. Check it out here.
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This summer Team #BikeBeyond struck down the popular narrative that people with type 1 diabetes, or any "disabling" condition for that matter must hold you back from achieving your highest self.
At some point nine years into my journey living with type 1 diabetes, I realized that having a support network was a crucial part of success in living with this disease. I wanted to help people living with type 1 realize that importance for themselves. But there's a challenge associated; you can't just tell someone to sign up for an event or online support group and expect that your words will inspire them to immediately do that. No, action is the key. That's why I went on this bike ride. I wanted to show people that you can do anything you want while living with type 1, but also, that none of us are doing this alone, nor could we have.
SUPPORT FOR PEOPLE WITH TYPE 1 DIABETES EXISTS IN MANY FORMS:
Diabetes Online Community --> websites and apps like Beyond Type 1 and MyGlu.org host communities where people can share experiences, ideas and ask questions about their type 1 diabetes. The cool thing about online communities is that someone is awake and ready to respond to you at every hour of the day & night. That is amazing, because managing type 1 diabetes does not go away once the lights go out! Beyond Type 1 and MyGlu.org two are good places to start out, but there are many more online communities in the DOC.
College Diabetes Network --> The CDN aims to represent people living with type 1 diabetes who are in the age demographic of 18-25. Typically, when someone turns 18 they are kicked to the curb of their pediatric endocrinology clinics and left to flounder in college; one of the most challenging, independent and transformative experiences of young peoples' lives to that point. That's where the CDN swoops in. "It's the best thing since Insulin" because you are instantly connected to thousands of other college kids who are facing the same difficulties as you in college. All the BG shame, embarrassment, late assignments, awesome diabetes hacks, diabetes burnout, mental health issues, body issues related to diabetes & tattooing your body with devices...well, you are not alone in thinking and living these thoughts all the time. There are programs and people, as well as opportunities to create programs to address and talk openly about these issues. After those 9 years of shunning support, I brought a chapter of the College Diabetes Network to the Claremont Colleges where it acts to support people living with type 1 diabetes from each of the schools in the consortium. Sometimes I allow myself to think, If there was a CDN at my school when I first enrolled, would I still have taken a semester off Sophomore year to get my diabetes in check? But alas, life takes you where it does, and I'm grateful that I've been opened to the idea of support and can now offer it to others in return.
Family: Everyone's situation is different. For me, my mom was my primary caregiver. My dad wasn't as involved or informed about my condition as I would have liked, but as the years have flown by I'm able to look back and have full appreciation for everything they've both done for me and my non-functioning pancreas.
Family: (not a typo) Now my family has grown 19 people larger with all of team #BikeBeyondand the folks who make Beyond Type 1 awesome from behind the scenes. **You don't have to bike across the country to find a family of T1D support like I have**
Friends: If you're comfortable, be open with them about your type 1! I had a realization recently that if people really want to know who I am, get to know me and be friends with me, then they must know about my type 1. Why? I live everyday through a lens of type 1, inquiring subconsciously how everything will affect my blood sugar levels. If I don't share that fact, everything until that reveal almost feels inauthentic. I don't like that feeling, nor do I think it's healthy to live life hiding something that is at the core of your everyday thoughts
Pets: Sometimes people get Diabetes Alert Dogs to smell their saliva! They're also really cute!
Me: I am not a medical doctor, but I will gladly chat with anyone about their experience or questions living with type 1, or about finding a support network!
To wrap this up, Zoe Mendelson from Folks- an online magazine published by PillPack - interviewed me after the ride in SF and wrote an article about it! Check it out here !
Thanks for taking the time to read my blog post!
With Love & Grease Marks,