The Lowdown -
By Gretchen Boger-O’Bryan
After the prologue that is urgent medical care, diagnosis and a crash course in Type 1 in order to leave the hospital, Bella’s first chapter in her T1D journey began. Armed with myriad medical protocols and an endocrinology team a phone call away, she and her family set to getting back to life as they knew it. Or so they thought.
Despite her personal supports -- which Bella readily notes are ample -- it turns out the transition to her old life was, well, impossible. Ask any T1D and chances are they’d agree; there’s a clear reset, like a biblical Before Diabetes reference point, that requires recalibration to a new normal in the old space.
Explains Bella, “Everything had changed so fast I didn’t have time to process it. I was handed a syringe of insulin and a load of information, and was expected to give myself that shot. Realizing that my life was going to be different from what it was before was difficult.” She adds, “I would look back at pictures and recall memories of when I didn’t have diabetes, and I longed for that life. For me, just accepting the fact I had diabetes was a thing.”
Although nearly four years ago, Bella still recalls the outing with friends shortly after diagnosis that had her suddenly donning a Type 1 advocacy hat she hadn’t realized she’d need or, perhaps, even had. “I was with a group of friends and we passed an ice cream shop. Someone said we should stop and get some. Another person said, ‘Shhh, Bella can’t have sugar.’ ”
While the sentiment may have come from a place of friendship, it provided Bella no comfort. “It made me really upset because I’d never had any issues with the stereotypical thought that I can’t have sugar. It made me angry that most people assumed I couldn’t have sugar, even though I can! I had to constantly inform others that Type 1 diabetes and Type 2 diabetes are different.” As for wearing that advocacy hat? She admits, “I still have to do that today.”
Bella wears a CGM and insulin pump, both among today’s technology to help those with the autoimmune disease manage the ups and downs each day, always looking to hone in on best practices and consistent blood sugars. Indeed, the science behind treating T1D has come a long way -- the first insulin pump was the size of a large backpack and some models even required a screwdriver to adjust dosages -- and today, it’s common practice for folks to see their blood sugar numbers by glancing at their phone or smart watch, and even their loved ones can track the numbers on their phone. Still, for all the advances in science and disciplined calculations, there remains a good deal of ambiguity in playing the role of pancreas.
“There are many, many things I’m constantly thinking about or struggling with. Regulating blood sugars is one of them, and a lot of different things affect that. One day it’s perfect, and the following day it’s a roller coaster of numbers. It’s never a perfect science. It’s an art. A trial and error.”
Bella also points out that all that technology brings with it a lack of privacy. “Another challenge is being open about my diabetes. I don’t like to show my pump sites, or CGM, and I don’t like having to treat a low blood sugar in public. I’ve definitely gotten better, but it’s still a real struggle.”
That day-in-day-out management -- even in the comfort of home, out of public view -- can feel like drudgery. “Sometimes,” says Bella, “I dread having to put on new pump sites or give myself an injection. It’s tiring to deal with.”
Despite all the challenges, Bella must forge ahead. But how? The answer comes easily: “I have so many supportive family and friends that have stuck by my side, and I’ve had the privilege to work closely with Kate Hall and her wonderful foundation, DiaStrong. Being able to meet others who deal with the same things I deal with, having them understand and get what I’m talking about? It’s so refreshing!”
And for the toughest days when feeling alone seems like the only feeling, remembering one friend’s sentiment quickly sets Bella straight: “Friends are like stars. Even though I may not always be able to see them, they are always there.”
Stay tuned for next week’s installment of Bella’s DiaStory, “Damage Control.” Gretchen Boger-O’Bryan is a writer, editor, nonprofit toiler by day and, most important, parent to a T1D, no matter the hour.