On Sunday, I sat a table in Perkins in Minneapolis with my friends Scott and Heather, engaged in the flow of conversation over grilled cheese sandwiches—the usual flow of topics with a few twists: exercise, coaching (in the life-coaching sense!), and diabetes. In the past, I’ve had conversations with my friend Bethany in which mid-sentence in a Starbucks [or elsewhere] she’s kind of stopped and said “Are you getting this?” to which I just nodded and said “Yep, keep going.”
“It’s just so crazy you know all this stuff about diabetes and you don’t even have it!” She replied.
A few years ago, I found myself surrounded within the Diabetes Online Community [or DOC]. And since then, I’ve learned a lot about what life with diabetes—no matter what type—can look like. Because not everybody with type 1 has the experience as another type 1. Not everyone with type 2 has the same experience as somebody else with type 2. And, mixing elements of both T1 and T2 are those with LADA—or type 1.5, and their stories will look extremely variable, too.
As Scott and Heather discussed Nightscout/CGM in the Cloud (how very smart/techy people with diabetes or caring for people with diabetes have managed to connect their Dexcom continuous glucose monitors through smartphones to upload their glucose data to the cloud, and from there, can load data remotely—ie. a parent can watch their child’s blood sugar levels from their desk while the kid is at school, the data can be streamed to a Pebble smartwatch to allow less-conspicuous access to BG levels, or a variety of other possibilities to allow even more of a safety net than CGM currently provides).
(Graphic source: DiabetesMine)
Scott had given me the CGM in the Cloud tour in August (so I arrived at Dana’s DIYPS talk at Medicine-X I was a bit more clued in than I had been previously!), also over grilled cheese, and while I’d heard about the system over Facebook, it was even cooler to see in person as he slid his Dexcom over and handed me his Pebble to see it first-hand. Dexcom has only recently become available in Canada (both standalone and integrated with the Animas Vibe insulin pump), and I shared this with Heather and Scott… along with the slightly amusing fact that I constantly have Animas Vibe ads on the side of my Facebook page because of all of the diabetes talk that goes on within my Facebook feed.
The reason, though, that I have so many friends with diabetes is perhaps because of diabetes, but more because many people with diabetes care about something much larger than their own story: they care about making the story of others better. I joined a Diabetes Social Media Advocacy (#dsma) chat on Twitter one night several years ago (and several more after that) and people were really enthusiastic about my non-diabetic self joining the conversation because I wanted to learn. The DOC has, in turn, become my support. They were the people who were constantly reaching out when I was in the ER for blood transfusions, or are the ones who reach out when I say my asthma is sucking—just as I do when someone tweets an out-of-range blood sugar, or shoot an iMessage off to a friend just to check in when they’re struggling with their diabetes. They are a big, passionate and loving community, and that is because of the individuals that are a part of it: they see the bigger picture, and they want to make the bigger picture BETTER.
In my day to day life, yes, maybe diabetes is just a passing thought when one of my few local friends quickly checks their blood sugar or takes an injection at lunch—but it’s also knowing enough that I can provide a bit of empathy and humour. One day at dinner, a friend tried to check his blood sugar under the table and I just laughed and said “Hey, I know what you’re doing, it doesn’t bother me if you use the table, you know.” If asthma has taught me one thing, it’s that we all try to be stealthy with our disease management sometimes, and often it’s more for the sake of not being asked questions than it is we truly want to hide what we’re doing—later that night, though, the same friend did text me his BG (we were, after all, at Olive Garden :]), and I hope that my openness can be a layer of support for him if he ever wants it.
In living with any chronic disease, it’s about feeling like you have options (even if, maybe, they are pseudo-options because they are necessary): to choose who you talk to—because I don’t have diabetes, on occasion friends with diabetes will message me because I don’t have diabetes but have a very basic understanding of what they’re talking about; to change up your routine; to use different methods of treatment. Using a continuous glucose monitor is one of those options—because while the information can be extremely helpful, it’s also a constant reminder of where you’re at and can lead to data overload. Same with using an insulin pump for those who are insulin dependent: it increases flexibility in some ways versus injecting insulin, but it also means that 24/7 you are tethered to a small machine or have an insulin pod stuck to your body. Which leads to the choice aspect: my friend Bethany (above) has had T1D for over 30 years. The last time we had lunch, she pulled out an insulin pen and I was like “HEY. Since when are you not pumping?!” (She laughed and was like “Wow, it has awhile since we’ve seen each other, hasn’t it?!”)
Where am I going with all of this?
My friends with diabetes have no choice about having diabetes—they make the choice to do their best, to advocate, to change their world and the worlds of others with diabetes though support, technology innovation, and compassion. Diabetes is 24/7, in a far different nature than asthma is: with diabetes, the same hormone that is provided through injections or pumping, insulin, to save a person’s life can also be lethal—diabetes is a constant balancing act. It is psychologically invasive in a different way than my own chronic disease is. None of us have a choice, but we can learn how to best support one another. If I can provide the kind of support that says “Yes, I want you to be healthy. I want to support you as I can, as a person without diabetes—I’m here to accept where you’re at and listen. I want better things to be available. I care.” this is what I want.
Read that last sentence over and simply take out the segment that reads “as a person without diabetes”—shouldn’t this be how we all interact with each other? By learning about where someone is at, and accepting them in that moment?
My friends with diabetes can DO THIS. They can manage their diabetes with the tools they have. And because they can DO this, the ins and outs of life with diabetes, I can certainly LEARN this: a few small lessons about their worlds that hopefully make them feel supported in the way we all want to be. Even if at some times that just looks like a non-diabetes conversation for a break, or having some snacks on hand and waiting out low blood sugars with my friends.
Because that’s the most important part: we are here for each other, because we’re friends.
To my friends with diabetes: Thank you for everything you’ve taught me—I owe you all a hug! :]
