Three things I learned from wearing a CGM
I do not have diabetes, but in working for a diabetes company, I felt that it was important to put myself in the shoes of someone who does – to better understand the steps it takes to manage diabetes and its physical and mental toll. I’m a “twenty-something” living a typical “twenty-something” lifestyle and it keeps me super busy. When I’m not face-down in my work, I’m staying active and spending my free time with family and friends. I commute down to Silicon Valley everyday to work at Glooko, an mHealth start-up with a mission to “make diabetes management easier.” And I wanted to understand first hand what that means.
I set out to wear a continuous glucose monitor (CGM) for one week to learn what it’s like to have to track my blood glucose continuously, similar to how someone with type 1 or severe type 2 diabetes would do in order to manage their insulin doses. Let me tell you, it was hard! And I knew it would be. Now more than ever, I realize how much it takes to manage diabetes. It’s a lot to deal with every second, every day. While I can’t fully understand what life is like with diabetes, I have a huge amount of empathy for the people who do.
Here are some things I learned:
I forgot everything… literally.
I’m not talking about how to carb count, bolus, or remember to check my blood glucose. I’m talking simpler than that. As embarrassing as it is to admit, in the five days I wore a CGM, I left my receiver at home for two of them. That’s only a 40% success rate! Any day I was supposed to be at work, my poor Dexcom receiver got left behind. To monitor my glucose levels, I needed to have my receiver, meter, lancet, and test strips and one or all of those things tended to be forgotten.
The first time I left my receiver was on my first full day of wearing a CGM. I was excited to constantly monitor my glucose levels and to be able to bug my co-worker Jeff, who has diabetes, anytime I went high or low to talk about my trends. That morning, as I was boarding the train for work, I realized that in changing purses, my receiver didn’t get included in the switch. I can’t tell you the amount of disappointment I felt. Day 2 and I was already having trouble. I felt like I was wasting the time I had with the CGM, especially since no data was getting to my receiver for me to review. At Glooko, I hear stories all the time of children with diabetes leaving even their pumps at home when going to school – I now realize that this is incredibly easy to do!
Three days later and I left my receiver at home again! This time, I made an active decision to leave it behind. I was a block away from my apartment when I realized that I had forgotten it. In that moment, I had to decide between going back to my place and thus being able to monitor my glucose trends throughout the day versus missing the train that I had set my mind on taking. While I took a moment to think about it, ultimately I chose the latter knowing full well that if I did have diabetes, I would have had to turn around. Monitoring my glucose levels would have been more important to me than a couple of minutes lost while waiting for the next train.
Whenever I leave my apartment, my mantra is to tell myself, “cellphone, keys, wallet” and as I go through that list, I make sure I have all of them with me. Living with diabetes, that mantra would become “cellphone, keys, wallet, receiver, meter, test strips, lancet”. And for some, that might also include an insulin pump, extra CGM sensors, glucose tablets, and so on. That’s a lot of things to carry around and I wish it was easier.
I cared what strangers thought.
I had heard before that some people with diabetes feel social stigma about having the disease. While the thought of feeling that way made sense to me, a little part of me couldn’t understand it because I never looked at people with diabetes differently. Having worn the CGM, I can say I get where they’re coming from. Even though no one treated me differently, whenever my sensor was visible or whenever I checked my blood glucose in public, I found myself wondering what people thought.
In wearing a CGM, I was curious to know how my activities impacted my glucose levels. If I exercised, would I go low? If I ate pasta, would I go high? The first day I wore a CGM, I went to a Hot Pilates class. I was certain I would go low and that my CGM would alert me. As a CGM newbie, I opted to give my receiver to the front desk and asked them to come get me if it buzzed. However, in asking them to do this, I found myself caring far too much about what the staff thought of me and giving them a longwinded explanation for my request. I work for a diabetes company. I’m just wearing this for a week. I don’t normally use a CGM so I don’t know how loud this device will if it goes off. It was tricky enough for me to figure out where to keep all of my devices, but I had to add on top of that this feeling of being different even when I was given no external cues to feel that way.
As I got more comfortable with wearing the sensor and checking my glucose levels as needed, this feeling lessened, but would stay at the back of my head.
I appreciated how quickly my body adjusted to my activities.
While wearing the CGM, I learned a lot about my body and how it reacts to the foods I eat or the activities I do. In the Glooko app, we specify if a glucose reading is out of range based on a lower limit and a before meal upper limit or an after meal upper limit. Early on at Glooko, I was told that the after meal upper limit applied within two hours after eating. Because of that, I thought it would take at least an hour for my glucose levels to adjust to my activities. The CGM data taught me otherwise!
From my receiver, I could see that whenever I ate candy because my glucose levels were trending downwards, I would immediately see my glucose levels start to rise up again. Whenever I thought I was going low because I was in a workout class and felt physically beat, I’d check my CGM and see that my readings were actually in range the whole time. Same for when I had a carb-heavy meal. Because I don’t have diabetes, my liver and my pancreas work in tandem to keep me in range. I didn’t know how much I take for granted how much my body does to keep everything in working order – wearing the CGM helped me to realize that and appreciate it.
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By wearing the CGM, I learned just how hard it is to manage diabetes. Even if I was an expert and could keep my glucose levels in control, I’d still have to carry around all of my diabetes supplies. I’d still have a CGM and meter whose data output sometimes don’t match. And to top it all off, based on this experience, my sensor might fall off earlier than I expected (this time, I only wore the CGM for five days when I was supposed to wear it for seven!) Even after five days, with every step, I could still feel and was very aware of the sensor attached to my stomach.
This experience taught me a lot and helped to put things in perspective. Even though I wish I could personally do more for people with diabetes, I’m excited to see the diabetes innovations that are becoming available. If these innovations could accomplish one thing, I hope they are able to make life with diabetes easier so that people with diabetes can get closer to making diabetes management an afterthought rather than having it sit top of mind.