Laughter in the lunch line. Running in the halls. Hugs all around. This is the essence of Friends for Life, the annual family-centric conference hosted by Children with Diabetes (CWD) every summer in Orlando, Florida. One cannot attend Friends for Life without feeling the powerful embrace of others who live just like you. The colored bracelets instantly bond strangers over breakfast, and as beeping Dexcom receivers pierce through the audience of a session, instead of one person feeling embarrassed, everyone checks to see if it’s theirs. These connections make everyone feel like it’s all okay—no—it’s more than okay…it’s cool to have diabetes. We’re all in this together, and being together is so much fun.
Friends for Life 2017 was my third CWD conference, and it did not disappoint. Exhausted but energized by this community of hard-working families, advocates and professionals all affected profoundly by diabetes, my inner optimist was right at home. How can you not feel good about managing diabetes when you’re in that environment, soaking in the newest research, getting the chance to see cutting-edge technology up close, and connecting with new friends and old who just get it? The photos that are displayed on the big projector at every meal show nothing but smiles. Diabetes stinks, but we’re all good!
So why was I suddenly crying listening to Dr. Desmond Schatz’s keynote talk, Diabetes at 212 Degrees?
With my own kids dropped off for their nothing-but-fun programming taking place down the hall, I settled in to my seat with my colleagues and other parents on Thursday morning, ready to be inspired and hear the latest on diabetes research. But within a few moments, the light-hearted optimistic mood changed in a way I hadn’t experienced at this conference before. Dr. Schatz, the highly respected professor, medical director, principal investigator, and current president of the American Diabetes Association, who has worked on type 1 diabetes research since the mid–1980s, spoke of type 1 diabetes as an epidemic that deserved, but was missing, a sense of urgency in research and funding. He presented alarming statistics on how type 1 diabetes compares to cancer, HIV/AIDS and heart disease in both the number of patients affected, the amount of money spent on treating and the level of research funding it has received by the U.S. National Institute of Health. He predicted remarkable numbers of new diabetes diagnoses expected over the next 20 years. And he demanded we bring diabetes to 212 degrees…the point at which water boils, to demonstrate the need to transform outcomes for this disease.
But before all that, he showed a video that stopped me in my tracks. A teen girl on camera described her life with type 1 diabetes, showing the pain, the anguish, the confusion, the overall burden that diabetes adds to her life and that of her family’s. With the social media hashtag, #NoMoreHiding, the message was that we need to share our struggles if we are ever going to bring research to 212 degrees. People need to see diabetes as a dangerous and incredibly expensive disease. And it’s up to us, those living with and caring for others with diabetes, to show that struggle.
This is what brought me to tears.
I suddenly felt guilty. Who was I, the eternally optimistic mom whose whole career is now focused on this disease as a result of her young son’s diagnosis just three and a half years ago, to think everything was going to be okay? How silly of me to think, “We got this,” and just move on with each day? Am I short-changing my son, and all those whose lives are affected by this disease, by feeling empowered and determined not to let it get us down? Am I actually doing more harm than good in seeing the glass as half full?
Later in the conference, I spent some time by the pool chatting with a colleague whom I met through my work at Glu. Mitch Lenett, who lives with type 1 himself, is also raising a daughter with the disease. We spoke of the keynote, and of some other presenters and sessions on the topic of burnout and diabetes distress.
He said something I’ll never forget: “I’ll never listen to a talk on burnout, or share my struggles with this disease. We can’t be burnt out. We have to feel empowered to show the positive side of life with diabetes. We have no choice.”
Mitch’s words comforted me, and they agreed with something else I had heard directly after the keynote. I shared my thoughts on the speech with a colleague of mine from T1D Exchange, and said how bad I suddenly felt for being so optimistic. I asked this man, a highly respected pediatric endocrinologist who was on the conference faculty for his expertise in working with teens, what was I to do?
“Be positive,” he said. “Don’t lose that. You just can’t.”
As the conference came to an end and I made my way through airport security with my family, I watched as my nearly ten-year-old son confidently showed his diabetes supplies and technology to the TSA staff. He just wanted to get through the line, get on the plane, and watch baseball highlights on YouTube while texting his friends about making plans when he arrived home.
Clearly, he’s got this. Sure, diabetes is a drag, but he’s not letting it get him down. He truly doesn’t want to be defined by his diabetes, any more than I want to be defined as solely the Mom of a kid with diabetes.
It’s a tough call for sure…but since the very beginning of this path my family is on, I have never wanted to be portrayed as someone who is complaining or asking for sympathy. This is our life. It is not what any of us would have chosen, least of all my beautiful, athletic, smart, and caring son, but it is here to stay…at least for now.
What do you think? How do you approach your diabetes…is the glass half full, or half empty? What will it take to bring diabetes research to 212 degrees?
—Amy Bevan, GluMom