Sometimes, while I’m lying on my son’s bedroom floor waiting for him to fall asleep (we recently moved him from the crib to a toddler bed — send help), I’ll scrolly-scroll my way through my social media feed. I follow a range of accounts, everything from the type 1 diabetes advocates to the musicians to the fashionistas. And I’m secretly delighted when I find the fashionable musician with diabetes who bridges everything together. I love seeing what people document and choose to share.
Looking at my social media feeds today highlights an amazing contrast to what I saw when I first started sharing my story as a PWD (person with diabetes, that is) online back in 2005. For a long time, I only saw carefully curated images of diabetes on social media. Perfectly flat CGM graphs with nary an excursion. Equally flat abdomens with pump sites attached. Plates of carefully arranged snacks and meals, well-lit, carb-counted, and looking gorgeously delicious.
Inspirational people. Aspirational moments.
But to be honest, I wasn’t aspiring or inspired. I was daunted by the diabetes perfection that social media put on display. And I wondered if these portrayals of diabetes were real — like when you see a photo on Instagram zoomed in on a cup of coffee, but you know if you were to zoom out, you’d see unwashed breakfast dishes and dirty napkins and maybe a cat sitting on the kitchen table, dipping its tail into the jam.
I wanted to see diabetes zoomed out. Not carefully curated but busy and messy, the way life really is. Sure, that three-hour CGM graph of a flat 80 mg/dL looks gorgeous on Instagram. But if we zoom out to the 24-hour graph, will I see all the blips and hiccups of a regular day with type 1 diabetes? The post-lunch spike? The slope downward after recess or a jog after work? Because even though I work hard at managing my blood sugar, I see blips all over the place on my own graph. Was I the only one who had moments where I was screwing things up and struggling?
Don’t get me wrong: I love sharing a bright, shiny 100 mg/dL on my meter, or a CGM no-hitter. Documenting those moments gives me a lift on the days when numbers aren’t so excellent. And I love seeing these moments shared by others, because who else but a fellow PWD knows how gorgeous and hard-earned that 90 mg/dL is? But the Big Picture also needs to be shared, giving context to this life with diabetes. We’re all attempting to pinch-hit for a less-than-productive pancreas, and success requires a lot of effort. This is why the diabetes community is so important to me. It’s real. It’s busy and messy and all the adjectives in between. People touched by diabetes share the small victories, the daunting moments, the life that diabetes is woven into; and by sharing, we’re making real connections with one another.
Diabetes isn’t a perfect math where you can just solve for x. Usually, we’re solving for “why.” And part of that equation is acknowledging — and appreciating — the sum of our community and what we document, every day. We are reframing the reality of our disease by sharing, showing others and ourselves that diabetes is a constant exercise in solving for that why.
Some days are easy, others are difficult, but none are absent effort.
Today, I’m appreciating the fact that so many people with diabetes are willing to zoom out, to share their real stories. Letting strangers look into their lives via a window on the Internet. Finding pieces of their own stories in the words written by others. These stories confirm that I’m not alone, that we’re not alone. Sharing our experiences with diabetes expands society’s perceptions of what diabetes really requires. And reshaping that perception gives us power.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.