How does my voice count? I’m one person out of everyone in America. There’s no way my voice will be heard.
This was my mindset before attending The Diabetes Patient Advocacy Coalition (DPAC) Training Meeting a few weeks ago. I quickly learned during this time that I had the opportunity to make my voice so LOUD that people only have the option to hear me. This isn’t done by yelling or being in people's faces... this is done by simply telling my story.
My story is..
I was diagnosed when I was 7 years old. I have amazing parents and an amazing support system that has only told me that I can do anything I want to do in life, and that diabetes isn’t going to make me miss out on things. With this mindset I’ve been able to graduate with my first bachelors in 3 in a half years while being a student athlete who helped my team win 2 conference championships. My mom preaches that to be successful in life we require certain tools in our tool box. She made sure I always had the tools (i.e. pump, CGM, needles, lantus, humalog, low snacks) I needed to be as successful as possible. I was rarely involved in the process to get those tools. She wanted me to be focused on my goals and to just know she would find a way for me to have them. Now that I am 24 and coming up on 26, the age in which I will have to find my own insurance, I have gotten more involved with the nitty gritty part of this disease. The more involved I get the more I want to learn how to be the voice for the T1D community and how to help everyone get their tools, too.
I found my voice during the DPAC Training Meeting.
Before this training I hardly had any experience with politics or advocacy. I advocate every day by standing up for people with diabetes, but to actually speak to people in power was a new thing for me. When I flew into DC, my training began. We took 2 days to learn about DSMT (Diabetes Self Management Training) and how difficult it is for patients under Medicare to get this training. We learned about the Congressional Diabetes Caucus and how important it is for our senators and representatives to be a part of it. We met amazing people who are making a difference in our T1D community and we learned how we are already experts in advocacy just by sharing our experiences with diabetes.
Every office we spoke with was engaged, had some kind of connection to diabetes, and wanted to learn how to make things better for people with T1D. The one that really stood out to me was when we spoke with Camille Lepire, the Policy Advisor for U.S. Representative Kevin Brady. In college she had a roommate who grew up going to Camp Sweeny, which is a diabetes camp in Texas. Camille heard her roommate talk about what the children at the camp went through in learning to manage their diabetes. She said how they had to grow up faster than the average 8 year old. She became emotionally touched when relaying this memory to us. I grew up going to Texas Lions Camp (another diabetes camp in Texas) and now work there when I get the chance. While I work there I focus on the kids. I focus on giving them the best experience possible and helping them just be a kid. Never did I think I’d be using my experiences at camp to connect with someone who holds a position in government.That is what happens though. Just living our lives to the fullest and being unapologetic about our invisible illness makes a difference.
Now, we need people to be a little bit louder by advocating on a different level. Advocating can be done in so many ways: speaking, writing, organizing, researching, training, social media, community building, etc. If this is something that interests you I’d urge you to check out DPAC’s website at diabetespac.com. Find out how you can get involved and enjoy the ride.