Adapting to the changing landscape of diabetes management in 2019.
For as long as I’ve had diabetes not much has changed. I mean we got pumps that were smaller, and had different buttons, and long acting insulins got a little longer acting. We got CGMs that were huge and painful and almost useless for day to day management. But for the most part even pump technology didn’t change all that much for about 15 years! But as we have seen in the world of tech we live in, technology seems to evolve at an exponential pace! Our lives have gone from one phone in a house and one tv, to houses having multiple phones and multiple tv’s, to cell phones… Now every 10 year old has a tv in their phone which is in their hand in front of their face! I’m 37 and I find myself grousing about technology moving too fast for me to keep up! I hate getting a new phone because I FINALLY figured out how to use my old one at a 4th grade level!!! But I was always able to depend on diabetes management being the same Walkman and laser disk level of technology I knew and was used to. I even got so bold as to complain about the lack of meaningful practical innovation.
But technology does not develop in our lives in a linear way, accumulating gradually over time (It would be easy to adjust to if it did), it explodes in massive leaps forward that change the way we view the entire world! This is amazing! It gives us access to new ways of managing that can change lives, that can save lives, that can RUIN lives?
Very often we tend to think that people who do not readily accept technology do so due to either inability or rigidity. We see people as being “too old to learn” or “Too set in their ways to adapt to change” But this is simply not how human beings are built. We all grow and learn as part of our very design. Learning and growing in adulthood brings with it a very real and very scary realization. “What if” what if I can’t do this? What if I find out that I’m not the person I always thought I was? What if I fail?” This can be a terrifying feeling, we have all faced it when we have been asked to grow out of our comfort zones. From a child riding a bike, to a student going to college, to an adult getting into the work force, to a new parent, to a retiree! Now, apply that to life long management of diabetes. You’ve formed a whole world and life of diabetes management based on medications and technologies that have barely changed over decades! And now in the last 3 years we have advanced CGM technology use at incredible rates, we have automated insulin delivery with Hybrid closed loop pump systems, we have people building apps on their phones that program their pumps that have no tubes and it all works on bluetooth that syncs to the cloud!! (Can we just pause and confess that most of us struggle to program our microwave clocks after a power outage.) This causes a lot of people living with diabetes to wonder “What if” and this can be paralyzing.
Technology is sold as an improvement on care and treatment of diabetes. This sends two signals “You can do better!” and “You were not doing well to begin with” For people who have measured a lot of our lives by A1C scores, lack of complications, and knowledge of our own processes, this is a really rough way to see ourselves. We begin to feel as if not adopting technology is a sign of not doing our best. And if we are not doing our best to manage diabetes, what are we doing?! What if?! What if I’m one of “those people” the ones who don’t listen to what their doctor says, who pass up opportunities to improve their management and health? Who am I?
Technology also has a way of revealing more of us than we care to know! I love the TV show House (It probably had a lot to do with my Acing nursing school) and Dr. House hated it when patients would get full body MRI scans because they’d always find some kind of tumor, he said “We’re all just a bunch of tumors we don’t know about yet” It’s a little dramatic, but the idea is spot on, wellness is a matter of perspective; what you can see and what you can’t. Technology lets us see more of our diabetes management than ever before! Pumps record our every insulin fluctuation, and CGMs record our blood sugar around the clock. But suddenly we also see a lot more than we ever did before of the times when the 6.5 A1C we took so much pride in was actually made up of nasty lows and hours of high blood sugars we had NO idea about! Our A1C hasn’t changed but we start to feel like that trophy we put on our mental mantle that reads “Good diabetic” if a fraud. We start to wonder if we were lying to ourselves all that time? Were we living like someone who was healthy without knowing we were actually full of tumors?!
We now have to grieve that person the “Good diabetic”. We have to let go of who were thought we were, and face and embrace who we are. We have to get mad about it, we have to regret every finding out, we have to start to reason and bargain and all the other stages of grief. But then we can accept this person with their spaghetti graph of CGM data that looks a mess. We can accept that person and THAT person can grow and thrive!!!
What if we put on an insulin pump with 600 menus and a half dozen automated features and find out it’s far too complicated to fit into our lifestyle? Do we now look at that trophy marked “Modern” and have to throw is in a box marked “Old” and stick it in the attic of our minds? Does not being able to readily immediately adapt to new technology make us someone we don’t want to be? Honestly, maybe. Maybe the me who devoured new technology doesn’t live here anymore. Maybe the person I am now has to work a little harder at it. Maybe the me I am today wont ever use every feature on my phone (my toddler showed me a new feature on my phone I did not know was there, this happens young folks!!) But that means I have to grieve the loss of the person I thought I was. I have to give myself the time and space to get mad about it, and bargain and deny and eventually accept it. Then I can take the time I need to learn. Eventually “Modern” gets replaced with a much more important trophy “Growing” and maybe “Good diabetic” gets replaced with “Resilient and Dedicated” When I ask my teenage little sister to help me program my new Loop App maybe “Independent” gets replaced with “Supported and Loved”
As people with diabetes we have to give ourselves the permission to try new things and to take the time that it takes to adapt. TO take the time that it takes to pull down the old trophies and box them up and grieve as we need to. This might mean it takes longer to take steps than we thought, and maybe “Quick learner” was a treasured trophy, it can be hard to face that, but “Hopeful and motivated” means you’re still “Growing” and that’s an amazing trophy that nothing can take down!
Here at Integrated Diabetes Services we are privileged to work with patients at all stages of growth and learning throughout the life of their diabetes management.
We have a practice designed to allow our clinicians to come along side out clients and take the time and caring it needs to make changes in our diabetes management. From taking on new technology, to figuring out how to make that technology fit best for them. We also live these journeys with you so we know that it’s an emotional journey of self identity that can bring its own struggles that have nothing to do with blood sugar readings! And we are here for that too. As clinicians we must always be mindful of how deeply personal our diabetes management can be, and technology becomes so much a part of who we are. We can’t just upgrade and move on, we have to allow time and space for adjustment that is entirely individual.
As a 75-year-old man who has had type one diabetes for 63 years, my last A1c was exactly 6.5. Using the Dexcom G6 CGM, I have found that concentrating on minimizing peaks and valleys in the graph is very effective for me. However, I will say that lifestyle adaptations have been the most important element in finding the best way to control my glucose levels. I went for many years without getting sufficient balance in this regard, and I want to urge anyone who has type one diabetes not to fool yourself. Insulin alone is simply not sufficient especially when it comes to your overall health levels in the long run. Please think about how you can reasonably work on exercise and diet in combination with insulin to lower your levels and gain consistency. Don’t hesitate to ask for help from Healthcare professionals, and also try to be transparent with those around you who love you and are willing to help you be held accountable.
Alicia, my God you are good, relevant and helpful to me. This is my second time to leave a comment w/you. This article was so appropriate to me and I agree with w/every word. My same problem still exist which is to find the “right” answers to which system to go with. (closed loop, CGM, Pump, app? for the first time as a type I ) You told me to look for summer results on the Tandem study, can’t wait. I met w/a Medtronic rep for an hour to learn about their system. Wonderful reps. I hope to decide by late summer which system to embrace. I still have to be patient w/my medical group, they are just a machine, so it is up to me and learning from you. Thank you
That was just a beautiful article. I have lived with T1D for 50 years. Even as a RN, CDE since 1985, I struggle to keep a positive attitude for MYSELF. Thank you for sharing. It makes me feel “normal”. :-)
So glad you found some support in this article Lee Ann, I’m only 37 and have less than 2 decades under my pump :) But I already find myself getting occasionally paralyzed by the rate of change in my own diabetes life. It’s so important for us and our clinicians to recognize that change takes time, and change for the sake of change is often not the best route.