Why Is it So Hard to Get Diabetes Right Onscreen?
A lot of people saw me win the National Book Award in 2017, both in-person and on a Facebook livestream, but this is what no one saw 20 minutes earlier: Me in the restroom, formal gown hiked up around my waist, trying to give myself an insulin injection in my hip while balancing on three-inch heels and holding my clutch under my arm.
It’s not a small clutch. None of my purses are small. They all need to hold several syringes, alcohol swabs, two bottles of insulin (one fast-acting, one slow-acting, and woe to you if you accidentally mix them up), a blood sugar meter, a small container of test strips, a Larabar or granola bar, and a plastic container of glucose tablets. These are the things that keep me alive on a daily basis. I do not go anywhere without them. I miss owning wristlets.
I was diagnosed with Type 1 diabetes when I was 26 years old, nine months before my father passed away due to his own complications with the disease. He had wrestled with it for years, and as a child, I watched his Sisyphean struggle of trying to stay ahead of his own body. I was also mainlining The Baby-Sitters Club books like pastel-spined heroin, riding my bike to the local Waldenbooks in suburban Orange County to see if they had the newest one. Bonus points if it was a Super Special.
I kept Stacey McGill at a distance, though. I didn’t want to read about her health struggles, her hospital stays, her anxious parents. I was already experiencing that in my real life, watching my father’s health go through an endless cycle of crests and troughs, and I wanted none of that in my safe space of Stoneybrook, Connecticut. Instead, I identified with Claudia’s creativity and envied Dawn’s easy breezy California coolness. Stacey McGill could keep her stale wheat crackers and sophisticated city ways. I wasn’t interested.
When I started watching the new Baby-Sitters Club on Netflix, episode 3 came up and I tensed: The Truth About Stacey. I remembered the book very well, the anxiety it had caused me as a pre-teen even before my own diagnosis. Thirty years later, I was still wary of seeing her on my screen.
As an adult, I’ve given myself insulin while hunched over in middle school bathroom stalls, all of which seem to be painted the same shade of Pepto Bismol pink regardless of where I am in the country. I’ve changed out an insulin pump in a tiny airport bathroom at JFK while wearing a winter coat during a blizzard. (For a while I had a pump, which supplies your body with a steady stream of insulin, but my longtime endocrinologist and I have found that injections of insulin are more effective for my blood sugar control.)
Whenever I see a character with diabetes introduced in the media, I wait to see this private life of mine. I want to see this person huddled in a stall injecting insulin before going back to their first date, or standing in their kitchen at 2 a.m., peering at the screen of their blood sugar meter, trying to see the number because they’ve already removed their contact lenses and have no idea where their glasses are. I want to see this person eating with friends and slipping away for a few minutes before the food arrives. I want to see this fictional person living their life, all of the beautiful parts that fit in between those moments of quick stabs and drops of blood, sharp needle pricks and random bruises afterwards. I want to see the work they have to do to survive in their own body, and I want to know why they continue to do it.
Instead, I groan when a diabetic character arrives on the screen or page because I know what it means: They’re a goner. I immediately say, “They’re dead” the same way I say, “They’re guilty” whenever a famous person cameos on Law & Order: SVU. (Find me a grown diabetic woman who wasn’t traumatized by Shelby passed out on the floor next to her screaming toddler in Steel Magnolias.) More than once, I’ve started a novel, met someone with diabetes, and immediately set it down. I know what’s coming, and I’m good, thanks.
Other times, the diabetic character is only that: diabetic. They don’t have a life outside of their disease, or a personality trait that isn’t based around it. It reaffirms why I disappear into restaurant bathrooms or downstairs powder rooms to quickly gulp a juice box when my blood sugars go low: I don’t want to be thought of as just one thing.
And then on Netflix, Stacey showed up to a baby-sitting appointment (Charlotte Johannsen!), felt her blood sugar levels dip, and pulled out a juice box. And I, a woman in my early forties, sat on my couch and sobbed because this was the first time I’d seen someone do what I do: save my own life and keep on living. I cried as she talked about the bullying she experienced, understanding so well the fear of wanting to keep the difficult things hidden, that quiet plea of Please don’t reduce me to the scariest parts of myself. What I couldn’t process as a child now made the clearest sense as an adult.
(I also laughed when Stacey asked for a Gucci fanny pack to hold her bedazzled insulin pump and supplies. Why hadn’t I thought of that?)
It’s tricky to think of Stacey as an adult—not after watching her stay young in a never-ending time trap that’s both necessary and comforting in a book series. I can picture her waiting in line with her large purse for a fancy restaurant bathroom, though, or lining up her juice and granola bar on her nightstand before climbing into bed. Or maybe that’s just me. I’m not sure, and that’s why kids—and adults—need to see her, why they need to know that their story continues, that their illness isn’t a plot device or a death sentence, that there are twists and turns you can never see coming, but if you take a deep breath and steady yourself, you can survive.
And more importantly, you can live.
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