You know that your child’s endocrinologist and diabetes educator are experts in how to manage type 1 diabetes. But unless they actually have diabetes themselves, you may wonder if they really “get it” when it comes to the day-in, day-out challenges of living with type 1.
It turns out many of them are wondering the same thing! And now one healthcare provider, Michelle Litchman, Ph.D., FNP-BC, a diabetes specialty care nurse practitioner and assistant professor at the University of Utah, has come up with a novel way for HCPs to step into the shoes of their patients through a perspective-shifting experiment she calls the Fakebetes Challenge.
Organized as a study, Litchman’s challenge is a weeklong simulation in which participant healthcare providers must live as though they have type 1 diabetes — they receive a glucometer and other diabetes supplies and are paired with a person with diabetes (PWD) who sends messages with simulated symptoms and blood sugar readings. Participants are required to count carbs, perform meter checks, and respond to numbers texted to them by their PWD partner throughout the day and night.
Could your diabetes doctor or nurse pass the Fakebetes Challenge? Here’s what one participant, Heidi Vawdrey, a nurse from Riverton, Utah, learned from the eye-opening challenge of living for a week like she had type 1.
Walking in My Patients’ Shoes
As a critical care nurse, I would often see patients with diabetes who came in with very high blood sugars. After correcting, we would talk about why their numbers might have gone out of range and what they could do to keep their diabetes more controlled in the future. Our conversations mainly stayed focused on things like finger pokes and recognizing highs and lows.
These days, I am studying to be a nurse practitioner and have a special interest in working in a family practice setting once I graduate. As a family nurse practitioner, I will see pediatric patients, including children with type 1 diabetes. To help these kids, I want to make sure I understand as much as I can about the experience of living with type 1. When I heard about the Fakebetes Challenge, it sounded like the perfect opportunity to do just that.
The Fakebetes Challenge lasted for one week. During that time I was expected to count carbohydrate grams in all the foods I ate and perform glucose meter checks at least four times per day. I was also paired with a “buddy” who has type 1 diabetes. My buddy would text me his real numbers, or simulated numbers based on what I ate, time of day, etc., and I would need to figure out how I would respond as a person with diabetes. Originally, the plan was for me to place a marker dot on my finger to represent a blood glucose check, but I decided to actually carry out finger pokes and use a meter to get the best possible sense of what it’s like to deal with type 1 care tasks.
As the week began, I quickly realized how time-consuming and stressful it is to count carbs in every single food I planned to eat. To help streamline tasks, I ended up finding some good phone apps for logging blood sugars and finding carb count information. By tracking carbs in my food and checking in with my buddy, I learned how different foods can affect blood glucose — like pizza, which is a real blood sugar bomb and usually required extra checks for highs even several hours after eating.
It just so happened that I had plans to go skiing during the Fakebetes Challenge week, so off I went to the slopes with my meter and snacks stuffed in my pockets. Going skiing taught me an important lesson: glucometers don’t like the cold! When I stopped for a scheduled check, my meter would not turn on due to the low temperatures on the mountain. I had no idea that cold could affect meters like this! Once the meter warmed up, it worked, but if I actually had diabetes, I might have just skipped a check in a situation where I was exercising and really should have been keeping track of my blood sugars. (I’ve learned since that excessive heat can also affect how a meter works.)
There were other times during the week when I dutifully counted all the carbs in the foods I planned to eat for dinner, but then halfway through the meal, I realized that I was no longer hungry and didn’t want to eat what I had planned. Had I actually bolused for the meal, what would I do?
I texted my buddy with my dilemma, and he texted back that when he boluses and then doesn’t eat the calculated amount, he must perform additional checks to monitor for lows. If he skipped carbs at dinner, for example, he might need to stay awake later than anticipated that night to perform checks and eat to keep his blood sugar levels from dropping. This is very stressful.
Finally, while grocery shopping, I realized I couldn’t take part in my usual habit of eating my way through the store by snacking on all the food samples, because I didn’t know their carb counts. I am a snacker and tend to graze rather than sit down for a meal. It’s hard to do this when you have type 1 diabetes! You have to be hyperaware of food intake at all times.
By the end of the week, I had developed a much deeper empathy for the day-to-day challenges of managing diabetes. When you have type 1, you have to think about diabetes almost every minute of the day. The adult patients I saw in critical care would sometimes call themselves “bad diabetics” for having out-of-range numbers; I thought about them when taking part in the Fakebetes Challenge and about how important psychological support is for this population.
It takes an incredible amount of work to manage diabetes, and for the first time in my career, I felt like I saw the big picture of what it means to live with type 1. This experience will stay with me. And most of all, I look forward to bringing my new awareness and understanding to my work with children diagnosed with diabetes and their families.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.
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