I remember talking to my mother in our kitchen when I was probably maybe twelve or thirteen years old, telling her that it was bad enough that I had to live with diabetes everyday. I certainly didn’t want to spend my free time talking about it!
Diabetes advocates? What a bunch of weirdos.
To be honest, it was probably more of a defense mechanism against an acquaintance of mine who was the diabetes advocacy equivalent of a famous actor. Even though she was a year younger than me, she had already traveled the country, met important politicians, spoken in front of thousands, been featured on television and in magazines. She was thoughtful, eloquent and fiercely determined. And I was fiercely jealous of her.
(For the record, her name is Clare Rosenfeld, and we went to camp together, and she knows all of this as I confessed it to her many moons ago, so nothing here is a secret.)
So perhaps the reason I disdained the idea of being an advocate was because I felt like if I couldn’t be as amazing as her, then there wasn’t a point. No one would listen or pay attention to me. I’d never have the kind of platform she did.
Much akin to being jealous of the popular girl in high school, you really never know how things are going to turn out until everyone grows up.
Clare was in fact the inspiration for me to apply to JDRF’s Children’s Congress, because, hey, free trip to Washington D.C. to meet important officials and talk about your life? Sounds cool to me
But once I got there, an entire world of diabetes advocacy potential opened up for me. You see, I had a supremely easy time with diabetes growing up. Not in the diabetes management aspect of things (A1Cs were in the 8s, and I had the same ups and downs — literally — as everyone else) but my emotional struggles with diabetes were pretty pathetic. I had wonderful parents, wonderful friends, wonderful teachers and school staff who literally did whatever I told them I needed. No one was the Diabetes Police, and no one made fun of me for anything I had to do to manage my diabetes.
When I arrived in D.C. and I started listening to the stories of other kids who weren’t so lucky, I kind of felt terrible. It would have been easy for me to sit back and go, well, that’s not my problem. I don’t have those issues. But I realized that just because I had it easy did not mean that I was exempt from helping. In fact, it was all the more reason to help!
I also realized that I didn’t really understand that much that was going on in the diabetes world outside of my own day-to-day management. Islet cell transplants? Xenotransplantion? What-the-what? And so that’s how my first website, CureNow, started. I wanted to explain the complicated world of diabetes in plain ol’ English. And I’ve basically been doing that ever since.
Advocacy can be a scary world to get involved with, though. How do you start? What’s going to make a difference? If there are so many other amazing people who are traveling the world, does it really matter if little ol’ me does anything?
Start At Home: You do not need to go to national conferences or blogger summits to make a difference. The people who are easiest to reach are often those in your own backyard. Here are some ideas:
– Write an op-ed for your local newspaper about living with diabetes.
– Ask your local Lions Club or Junior League to speak at a meeting.
– Create a fundraiser in your hometown through your school or other civic organization.
– Use social media to share facts and information with your non-D circle.
Volunteer with Established Organizations: JDRF, ADA, DRI, TCOYD, DOC initiatives, your local camp or non-profit organization… all of these organizations live and die by their volunteers. There are always events and programs that need an extra hand or two to get going. Join a committee or volunteer for a board. Or just show up on the day of the Walk or gala to make sure everything goes swimmingly!
Talk To Those Who Ask: At some point, you are going to face a member of the Diabetes Police. They probably aren’t even trying to stop you from eating or doing whatever you plan… they’re just confused! Seize the opportunity to give a thorough (but polite!) answer as to why you can eat that. Sure, not everyone will be interested, but you never know when you’ll pique someone’s curiosity. Most people know more than one person with diabetes, but if they aren’t intimately involved in the care, they probably don’t know much about it. Take each question as an opportunity for some advocacy.
The amazing advocates you read about? They are no different than you. They have no magical powers , no secret weapons, no underground bunker with a butler named Alfred. They are normal people who had an idea and decided to do something about it. They went to meetings. They networked with others who are passionate about finding a cure. They sent emails, made phone calls, and asked questions.
Go for it. We’re right behind you.