In the course of my travels I have been doing interviews with people with diabetes—and as you will soon hear, I like to conclude each conversation by asking, “What is one thing you’ve never told anyone about diabetes?”
Some answers are profound or shocking. Some are evasive. Some, like the one I’m about to tell you of, just kind of make me sit back and rethink how I see diabetes and so much of what I have always taken for granted.
On my last trip I was in Baltimore—a very interesting city with a lot of struggle at its core. Driving through downtown to conduct interviews at Johns Hopkins University, I passed a variety of homeless communities—mostly tattered off-brand tents pitched and patched together under the overpasses. This was very different from the tent dwelling I have taken on by choice in the past as a means of escape through adventure.
As I started this project I had thought primarily of telling stories of people in rural areas—isolated and cut off from the gadgets and access to medicine which I began to enjoy only very recently since coming to work for T1D Exchange. I didn’t expect to find this same type of isolation in such a populated, urban context. What most people don’t know is that I spent my adult life (about the last 10 years or so until December 2014) with no insurance and occasionally on Medicaid. I went days without testing my blood sugar and subsisted on expired insulin that I bought when I could or when it was given to me. Insulin pumps and CGMs were like unicorn sightings—and it built a sort of disconnect between me and those who had access. It’s easy to forget that this is the reality for most people when you live in a world of diabetes innovation.
A Secret Truth
I sat on the sofa in downtown Baltimore concluding my interview, pondering the invisible people hiding in plain sight and I asked my guest to take a risk—to share something with me that he’d not ever said about diabetes. This is always a challenge—because so much of what really impacts our life with diabetes has to go unsaid. Packed away. Out of sight, out of mind—because dwelling on the reality would make it impossible to live functionally from day to day and after all, since we look pretty healthy, no one will stop and entertain our complaints.
“I don’t share photos of my diabetes on social media—like when I have a really good blood sugar or my CGM graph is perfectly in range. I won’t put that out there.”
This answer kind of took me by surprise. I see lots of these types of posts and to be fair, I’ve posted my share of them. I am always excited when I get it right—and frankly I’m proud of it. Who wouldn’t want to be acknowledged for their hard work, I wondered?
“Well, I just know how many people don’t have a CGM. There are people who may be watching me who could manage just as well if they had good insurance and the tools necessary—like I do. I don’t think showing what I can do does anything to help them when they can’t even get access to the tools necessary to have a chance at that kind of control.”
This took me aback—it wasn’t said in judgment—this was his “secret truth.” I always had thought that showing what amazing tech can do would be inspiring but when my guest said this, it took me back to a time, not too long ago when I would roll my eyes and keep scrolling past the CGM posts in my social media feeds because it wasn’t even close to being an option for me.
I thought about how defensive some people become about their management when others challenge their strategies—something I always chalked up to ego or self-importance—and it occurred to me that many people are confined by the tools they cannot afford. Poverty isn’t always as obvious as living under a bridge—it can be as insidious as constantly being denied tools to be healthy that you see other people around you constantly enjoying and taking for granted.
How do you talk about that? How do you change that?
I don’t have a cut and dried answer to that—but giving a voice to these perspectives is a start. What really motivated me to work with T1D Exchange is not just to advance the level of care upwards for those with the most resources, but also to ensure that those advancements elevate the entire community—because the chance to be healthy and free of complications isn’t a luxury. That is something that I believe we are doing, slowly but surely through our work here. I don’t write this to make anyone feel guilty, although I realize that this reality makes people uncomfortable. It should. It needs to. The only hope we have to create change is in response to an ongoing confrontation with reality.