Two years ago, I stepped into some very large shoes as the Medical Director for DYF. As many who have been to camp can attest, it is a transformative experience for children and their families. I myself experienced the Bearskin Magic, as I too attended BMC as a camper. Between then and now, I’d returned many times in a variety of roles. Now, in a leadership role, I started to think about why camp is so helpful to those affected by diabetes. Why does “Bearskin Magic” exist? For better or worse, this led fairly quickly to thoughts about my patients, and what drove their success with long-term diabetes management.
There are, I think, three key components to successful long term type 1 diabetes management. These three things are key to camp’s transformative power: knowledge, community, and resilience.
The first part of diabetes management is what I’d call the “blocking and tackling” of disease management. Simply put, it is acquiring the necessary knowledge to establish and maintain glycemic control. How to bolus, change an infusion set, respond to high blood sugars, count carbs… the list goes on and on. It is complicated and difficult to master, even under the best of circumstances. How do I account for exercise? For pizza? For a cold? What do I do when my pump fails? When should I trust my CGM (or not)? This knowledge component is often sold as why (or how) camp is critical— and it is! Without the knowledge and ability to complete these tasks, it is essentially impossible to successfully manage type 1 diabetes.
What is interesting about diabetes is that that, after a few years of living with the disease, most people have obtained the basic knowledge they need to know. No one knows everything and there is always more to learn, but most people know enough. Yet, in spite of this, there are vast variations in how well diabetes is managed. I will see patients go through a period of improved control followed by a period of dramatically poorer control. Why? Knowledge alone cannot explain this.
A common refrain of those new to camp is, “I’ve finally found my people.” Or families will say, “We felt so alone in dealing with this. Here, everyone gets it.” Managing diabetes, even under the best of circumstances, is difficult. And, I would argue, it is nearly impossible to do alone. The sense of isolation and day-in, day-out struggle that management involves is a weight that is too heavy for any one person to bear. Community is a way to share that burden, making it lighter and easier to carry. So, the second pillar of success, the antidote to loneliness, is community.
Regardless of supportive communities and diabetes knowledge, everyone will go through rough patches from time to time. This is as true in diabetes as it is in life. Given that, the last critical component is resilience. Simply put, resilience is the ability to recover from adversity. Resilience is strengthened through relationships, by overcoming obstacles, and by noticing and shifting the narrative that is driving your current view.
Resilience entails building the capacity to navigate difficult situations.
Adversity is experienced at some point by everyone who is affected by diabetes, including siblings, parents and grandparents. Camp works to teach and encourage behaviors, thoughts, and actions that allow kids and their families to manage the challenges they are facing. We cannot eliminate the difficulty that comes from living with diabetes, but we can help kids and adults learn to successfully navigate those challenges.
These three domains—knowledge, community, and resilience—are not separate, but are overlapping and mutually reinforcing. So ask yourself, how am I doing in this schema? Where do I need help? Remember, sometimes taking care of diabetes involves checking a blood sugar. But sometimes, the most important thing you can do is to spend time with another person or family, that “gets it.” Sometimes the most important thing to do is to recognize the defeated story you are telling yourself, and choose to tell yourself a different story.
Justin Altschuler, MD
DYF Medical Director