In honor of March being Women’s History Month in the United States Tidepool wanted to share some steps we’ve been taking to better understand an experience many women share that can make diabetes much more difficult: menstruation.
In late February 2021, we launched the Tidepool Period Project, the first step of which involved a call to people who menstruate to share their diabetes and menstrual cycle data with us for three months. The amount of interest was both astounding—because we didn’t know what kind of reaction this project would receive—and disheartening, a reminder that so much of the research conducted in the medical and scientific communities has excluded women’s bodies and left women in the dark about how to manage certain bodily processes. We can do better.
I have had type 1 diabetes since I was ten years old. Later this year I will be celebrating my 23rd year with this diagnosis. Like many people with diabetes who were diagnosed at a young age, I don’t exactly remember many details about my early years with diabetes since my family was handling most of it. I remember giving my first injection about four days after I was diagnosed so that I could go to a sleepover. I remember the girls on my cheer squad knowing they could check what time it was by looking at my insulin pump while on the football field since we couldn’t wear watches (and cell phones weren’t commonplace at the time). I remember my highest high blood glucose and my lowest low vividly, and I remember getting my first period.
When it comes to diabetes and periods, I recall many days being sent to the nurse's office for horrific period symptoms in those early years, though I frankly don’t recall much diabetes interaction. I suspect this was likely due in part to a lack of major diabetes events, and lack of CGM to give us enough data to provide insight into my teenage diabetes habits. And just like diabetes, my relationship with my periods has changed over time. Some months I need massively different insulin doses the week before a period, sometimes I feel like I never need to bolus for anything the week of my period, and then there is the occasional unicorn month that nothing happens at all and my diabetes just goes on like it has—its head in the sand. I’m sure I’m not the only one who feels this way - I can’t often make heads or tails of it, and nobody seems to know the answer. We need to do better.
Prior to coming to Tidepool, I’ve worked as a diabetes educator for most of my nursing career and taken care of people as fresh as under two-years-old to as experienced as 94-years-old. Menstruation has not often been the topic of our visits, unless it is. And when it is, it’s a complicated conversation fueled by the lack of research, my professional experience, and most importantly the data given to me by the patient. That patient data is the most valuable tool I have as an educator in helping people figure out their needs while navigating diabetes and menstruation. We have to do better.
We know that not all women menstruate, and not all people who menstruate experience the same symptoms or effects on their diabetes. The more we learn about this, the more it is apparent that we really need to make this part of life a bit easier and we’re interested in all the exciting ways Tidepool can do that: through design, education, data science, and user support.
This project started off with a small exploration in the Summer of 2020, led by myself and two women from our Product and Design teams. The three of us had the privilege of talking to a few people who menstruate and clinicians via Zoom and we gained insight from their experiences, goals, and needs that aren’t met when it comes to diabetes and menstruation. There is so much to be done in this space and we know that we are just scratching the surface with the Tidepool Period Project.
With the Tidepool Period Project, we’ve asked people who menstruate to share their data with us and start tagging #PeriodStart, #PeriodEnd, and #RescueCarbs in their Tidepool accounts for three months. So far, we have 86 people sharing their data with us. With their help, we will do better.
This initiative has many goals, some of which I’m sure we haven’t even teased out yet and will discover as the project advances. Here’s what we’ve started to think about:
- What’s the best way to communicate with Tidepool users to collect data that doesn’t greatly interrupt but still provides us, and in turn them, with valuable information?
- Looking at the data, can we identify common themes around hypoglycemia and periods?
- How can this data and this project help us identify opportunities for a future version of Tidepool Loop to help with menstrual cycles?
Once again, we understand not all women menstruate, and not all people who menstruate are women. If you’ve ever experienced either your own, or someone else’s menstrual cycle with diabetes, you’ll know that there is so much more to navigating this experience than we could hope to address with this initial project. But this is just the beginning. If you have an interest in making menstrual cycle and diabetes data more accessible, meaningful, and actionable, we would love to hear from you.
You can email TPP@tidepool.org and we will gladly talk with you about your experience or knowledge to help us move forward here at Tidepool.