By Catherine Marschilok, M.S.N., C.D.E., Board Certified in Advanced Diabetes Management
Nobody can explain what it’s like to live with type 1 diabetes the way our kids can. What’s more, countless children with type 1 diabetes have found a tremendous sense of empowerment and satisfaction in learning how to talk about their lives with the disease, helping others, and advocating for their own cure. They often begin by telling their friends about their diabetes, finding that the more open and comfortable they are, the more likely their friends will respond in kind and be there when they are needed, such as during a high or low blood sugar emergency. They also gain from connecting with other children with diabetes, for example through a support group, diabetes camp, or online blog. Such activities help to raise children’s self-esteem, reassure them that they are not alone with the disease, and help them to gain mastery to better manage their diabetes.
From that point, many children learn that they have the power to make life easier for other people with diabetes. They may talk to newly diagnosed children in their local communities, or volunteer at a local clinic or diabetes camp. By reaching out to help someone else, their own problems seem to become more manageable.
The next level of action is to become an advocate for diabetes awareness and the cure for the disease. I think sometimes that families are reluctant to venture out into that arena, but speaking as a parent of two (now adult) children with diabetes, and as a veteran of many years of advocacy efforts by the whole family, I can tell you that the rewards are significant.
How do you get started as an advocate? Many children begin by talking about diabetes at school or a local event, or they help to raise money for scientific research by participating in their local Walk to Cure Diabetes. JDRF’s Family Walk teams raise tens of millions of dollars every year. Over the last several years, many thousands of children–along with their families–have moved to the wider public arena, achieving extraordinary success by helping to raise awareness, secure critical funding for research, and advancing legislation on vital issues that will advance cures and treatments for type 1 diabetes.
Every two years, JDRF’s Children’s Congress gives kids with diabetes–from ages 2 to 17–the opportunity to go Washington, DC, to explain how they deal with their diabetes every single day of their lives, and tell our leaders that they need a cure. To date, more than 700 children have had the unique and empowering opportunity to help Members of Congress understand what life with type 1 diabetes is like and why research is so critical.
Similarly, through JDRF’s “Promise to Remember Me” campaign, children and their families in every state have met with their U.S. Senators and Representatives to tell their personal stories about life with diabetes, reflect on their fears, and share their hopes and dreams. Through the “Promise” campaign, Children’s Congress, and other grassroots advocacy programs, our representatives in Washington have come to see children instead of statistics and have begun to care about diabetes in the way that we families do. As a result, they have passed critical legislation like The Special Funding Program for Type 1 Diabetes Research. For the children, a meeting with their legislator is a living social studies lesson–you actually can meet with your Senators and Representatives and have an impact!–and one they will never forget. As Carolyn (Children’s Congress 1999 delegate) puts it, “I think I helped put a face on diabetes, and being involved in finding a cure has helped me in dealing with diabetes. I’m doing something about it rather than just sitting back.”