Diabetes Independence

Perspectives

Diabetes Independence

Hillary Rasker is a new blogger for DiabetesSisters. She has been living with diabetes for 15 years and is so happy to be part of the DiabetesSisters community. She lives in southwest Montana where she spends her days riding her bike, attempting long runs, baking bread, and working for Schedulicity.

According to family lore, my first full sentence was “I do it myself.” My mom tells the story of how she would tie my shoes for me, and I would kick and scream for her to untie them so that I could “re-tie” them myself. I was 3 years old at the time, and totally inept when it came to tying my shoes, but for me there was greater value in experience than in observation. Like many childhood traits, my stubborn independence has followed me well into adulthood, stomping its feet the entire time. Rather than have someone tell me where to go, I would rather walk by myself, feet in the dirt, and make my own mistakes. I trust that knowledge and confidence are friends I will make along the way, and for the most part, this is true. The downside of this perspective, however, is that it can isolate me from those who have walked down these paths before. I often look back at tough moments and wonder, “How much time could I have saved myself if I had listened to the advice of others?” The Gemini in me then reaches to the other side of the fence and ask, “How much is lost when you don’t learn it for yourself?”

Diabetes, unfortunately, doesn’t care what my personality type is. Diabetes does what it wants whenever it wants, and will not wait around while I figure out how I feel. In this light, my diabetes and I are more alike than different. I find a friend in my diabetes. We’re indecisive, and impatient, and stubborn. We are also a beautifully evolving journey, changing and learning daily, and acknowledgement of this is where the growth starts. The pivotal moment came for me when I decided, consciously and intentionally, to engage in a partnership with my diabetes. This process is threefold. First of all, I choose to engage with my diabetes, and accept the tough moments of stubborn highs, dangerous lows, and possibility of complications down the road. Second of all, I choose engage with the technology available to me, using my glucose meter, insulin pump, and CGM to the maximum extent that fits my management style. Lastly, I choose to engage on a deeper level with my community. This means sharing my story, offering insight, and listening to advice that comes from the diabetes community, as well as being willing to share my vulnerability with loved ones.

The first part, “engaging with my diabetes,” has been the hardest one. It requires an honesty and a bravery that I don’t always have. It means realizing that diabetes may never go away, that pregnancy and childbirth may be harder and more dangerous than they already are, and having real conversations with my partner about the role he plays as caretaker. With this acceptance comes a renewed confidence in my ability to move towards healthier days. That easily transitioned into the second part, “engaging with technology.” The Dexcom CGM has been a game changer for my management platform. I now have a way to be proactive, rather than reactive, to my daily blood sugar trends. It seamlessly integrates into my active lifestyle, and I find that a visual representation of my blood sugars can trigger fascinating conversations in the diabetic and non-diabetic communities alike. With the Dexcom CGM, my husband and I have taken advantage of the Share system, in which my daily blood sugar graph is available to him on his phone. This means that he can see, at any time, what my blood sugar has been and where it’s going. He also gets an alert when my blood sugar drops below a certain number, and this feature has saved my life during nighttime hypoglycemia. The stubborn part of me is terrified by this, as it means handing over the reigns of control with a willingness to share. It’s also invites my partner to join the management conversation where he feels comfortable. The more I share, the more I learn that he can be sad, and scared, and worried, and hopeful about our future together. Shared hopes and shared dreams, but also shared diabetes burden, can help lighten the management load.

There is so much to be thankful for: I have wonderful friends and coworkers; I am able to hike, mountain bike and ski right from my house; and I have a family that loves me despite the fact that I consistently empty the candy drawer. Additionally, I have the opportunity to join the diabetes management conversation in this safe space, and that’s a privilege that many do not have. I have my diabetes in my life as well, and we are doing our best to have a harmonious co-existence. Just like a relationship can help you learn more about yourself, and a good partner can bring out the best in you, technology keeps open and healthy channels of communication between my diabetes and I. We can chat every scenario out, to see: where are we now? 130? Awesome! 60? Let’s get a snack. 350? Ugh. Let’s feel sad together for a moment, and then look back on the CGM graph and see what we missed. Moving forward, how can we work better together?

Part of this shift in perspective requires a language shift, from “I am a diabetic” to “I am a woman living with diabetes.” This division of identity, a practice at recognizing diabetes as a separate, sentient being that I choose to live my life with, helps me gain perspective during difficult times. It also helps me communicate to my loved ones, who do not live with diabetes every day, why I may or may not be able to join in on certain events. It’s not that I don’t want to go for a run, but rather that my blood sugar has been low all day and “it” doesn’t feel like going for a run. I find an identity in diabetes, but it is not my sole identity. We work together, and I am far more independent because of this partnership. With the support of a wonderful husband and family, understanding coworkers and a solid medical team, I have the confidence that diabetes and I can coexist in this long, happy life. We will do it together, and we will make it our own.