Building Empathy for Chronic Disease Patients Through Immersive Experiences: A Medical Student’s Perspective

As medical students, we are taught how empathy can help create strong relationships with patients, but there are limited opportunities to gain a fulsome understanding of what it is like to live with chronic disease. This summer I had one of these opportunities while working as the waterfront director of a camp for kids living with Type 1 Diabetes (T1D).

I have been around T1D my whole life as my mom was diagnosed as a kid, so choosing this camp had a personal connection for me. My exposure at home was filtered because my mom did not want to burden me with the full scope of her experience. I hoped it would be a fun summer while giving me a broader perspective about living with diabetes than what I already knew. My immersion watching the campers - and most of the staff - manage, and struggle to manage, their condition gave me a better understanding of this disease than I could have achieved in almost any other way.

In class, we learn about A1C’s, counting carbs, insulin regimens, diabetes technology, and complications. But there are vastly more impacts that these patients face every day. Several people expressed that their doctors did not acknowledge these challenges which made them feel they were not being seen as a whole person, but rather as a disease. At camp, kids are encouraged to be kids, while being supported to manage their condition.

My job was to make sure the kids had fun and safe waterfront programming. Alongside that, I had to follow protocols. If the kids came to swim and their blood glucose was below a certain threshold, they were given specified amounts of carbs and had to wait until their sugar came back up. I witnessed their frustration watching their friends have fun. They asked if they could swim anyways, or anxiously waited to retest. When they overestimated how much they would eat at mealtimes and became full before they consumed enough to counter the onboard insulin, I had to convince them to eat sugar often beyond the point where they felt sick. The cabin staff had to test kids several times each night and if someone was low they had to be awakened and cajoled into eating something they usually did not want. These are struggles that patients face every day and they never get a break from thinking about or managing their disease.

We also ran family camps, where I saw the impacts on those who care for affected family members. Parents of kids with T1D are often more protective than most. During these weeks, we ran parent only sessions where some staff would stay with the kids. One family was reluctant to leave their recently diagnosed 2 year old until they realized the staff member they were chatting with was also living with T1D. The parents were relieved knowing maybe for the first time since her diagnosis that their daughter would be safely cared for by someone other than them. This condition is full time and for kids too young to manage themselves, families never get a break.

I also observed how public perception can impact people with chronic illness. On one occasion, we were running short on hypoglycemia treatment supplies, so I went into town to pick up several large boxes of Rockets (candy). The cashier asked why I needed so many and I said it was for a Diabetes Camp. She looked skeptical even after I explained it was for treating low blood sugars. The flawed perception is that all people with diabetes cannot (or should not) eat sugar and people with diabetes are often judged for what they eat.

I know that what I learned this past summer can be applied to many chronic disease patients. It opened my eyes to challenges these patients face daily and helped me understand that lab results are only one part of the picture. Context and experience are critical. This understanding will help me be more thoughtful and compassionate. When someone is struggling with managing their illness I am better positioned to understand their challenges (or at least know that I need to ask more questions), which will hopefully help me support them. I think that immersive experiences into the lives of patients with chronic disease can really help medical students to better empathize with their future patients and I am grateful that I got that opportunity this past summer. I would encourage anyone in medical school (or interested in that career path) to seek out similar experiences.