On my most recent birthday, a family member sent me a card that had a picture of a cake on the front. Inside, he wrote, “Since you can’t have the real thing!”
Now, I love it when someone other than my husband and insurance agent remembers my birthday, and I wasn’t about to write a rebuttal to a greeting card. But it touched on something I think most people with diabetes experience at some point – those moments when someone close to us still doesn’t quite understand our disease or how we manage it.
It might show up in a sideways glance at what we’re eating, a comment implying we don’t have choices, a poorly timed joke, or even an uncomfortable sense that a loved one secretly believes we brought diabetes on ourselves.
Diabetes of either type seems to invite misunderstanding and assumptions in a particular way that other conditions don’t. This could be because of the extremely unspecific yet continual way it’s covered by the media, or because almost everyone knows someone who “has it” (not realizing “it” can have so many different expressions) and therefore thinks they’re in the know. Whatever the reason, if we only had to deal with being misunderstood by the media or strangers, it would be a tolerable frustration.
Where it becomes something deeper is in our interactions with friends and family – the people we’re closest to.
Being misunderstood can be lonely, painful, and maddening, and if we’re in an ongoing state of these feelings, our mental health takes a hit. How we handle incorrect assumptions of misguided attempts at help from family depends on existing dynamics and, of course, our own personalities. In a family where there’s already open communication, it can be easier to counter misperceptions than in one where give-and-take discussion isn’t the norm. The same goes for friendships, though we get a little more choice about who our friends are!
Personally, I’m not great at letting things go. It’s hard to let a, “Can you have that?” comment pass, or resist explaining (again) that my type 1 is not exactly the same as their friend Jane’s type 2. I confess I often get my back up about it all, ready with a multi-point presentation on nutrition, insulin, planning, and my free agency as an adult. Look, I want to say, I’m dripping with medical equipment that costs a small fortune. I want to live a long life with minimal complications. I think about this all day every day, so trust me, my decision about the mashed potatoes is not casual.
“I’ve often said that managing diabetes is a full-time job with no holidays and no breaks,” Minnie Chen, health care provider with Kaiser Permanente, told me. “And even if you eat the same things, exercise and take your medications the same way every day, it’s not a guarantee that your blood sugars will be stable.” She emphasizes the time, effort, “and above all, mental strength,” to deal with the ever-changing challenges we face daily.
It feels perhaps uniquely difficult for those of us who were diagnosed with type 1 in adulthood. We didn’t grow up with our family taking an active role in the complex moving pieces of our care and knowing how to help and learning when to back off.
When I was diagnosed at 41, I didn’t even know it was possible to get that diagnosis that late in life. Then again, neither did my doctor (who initially misdiagnosed me), so maybe I shouldn’t be surprised that people who knew me before diagnosis have trouble internalizing the details about my condition and its care. Still, it’s hard in close relationships to feel like you have to keep explaining something so fundamental about yourself. You want those who love you to just… get it.
Writer Dave Holmes who, like me, was diagnosed with type 1 around age 40, said, “I wish people knew how much math and planning are involved, how mindless eating of even a handful of crackers is not possible, how I can’t just pick up and leave for a weekend without some very careful packing that involves ice packs, how when I am riding out a low I need to be left alone but also kind of low-key kept an eye on, how the thing of SweeTarts in my messenger bag is actually medicinal.”
It’s a lot! And it can be hard to get into without sounding defensive, but the truth is sometimes we are defensive – in the sense that we’re protecting our agency, self-knowledge, and right to have the final say in our self-management. We’re the main character in the movie of our management, while even our closest loved ones are only seeing short clips.
I know I’m not alone among people with diabetes when I say it’s important to me to feel in control of the script as much as possible, and empowered to make informed decisions. Sometimes my informed decision might lead to what looks like “good diabetic” behavior to observers. Sometimes it will look careless to anyone who isn’t me. And sometimes I may do something that really is careless, but I want my friends and family to understand it’s a risk I’ve literally calculated, and I’m allowed to make that call.
Like a lot of us, Holmes learned early on that one powerful antidote to these frustrations is finding a community of other people with diabetes.
“At first,” Holmes said, “I gravitated toward Type One Run because I wanted to learn how to safely stay active, but it soon became much more than that. It became critical to have friends who I didn’t have to explain all this stuff to, both because I didn’t want to and because I couldn’t; it was all so new and confusing. So I got spoiled pretty quickly, having new friends who got it, and the frustration of friends or family who didn’t get it was largely alleviated.”
My outlet is having a special, separate Instagram account where I only follow other people with diabetes. I take some time most days to scroll through the memes, the recipes, the pictures of pumps and insulin vials and continuous glucose monitor graphs that collectively help me feel much less alone. I know I can post there and immediately be seen and understood.
I’m hopeful, too, that we can (with some patience) teach our closest friends and family how they can be the ones coming in clutch with a bag of Skittles when a low hits or strategically shifting the topic when they can tell others around us are paying a little too much attention to our food or drink choices.
In her practice, Chen has had conversations with family about “refraining from making judgments or giving unsolicited advice about how the patient is managing their diabetes.” Instead, she encourages them to ask, “‘How can I help support you?’ Then, simply listen, because sometimes just showing that you care goes far beyond any advice you can give.”
If I turn that advice around, maybe I could ask those closest to me, “What questions do you have and how can I help you understand?” And then listen for where their assumptions are coming from so we can sort them out together
This article originally appeared on diaTribe Learn. Written by Sara Zarr.
About Sara Zarr
Sara Zarr is the author of eight novels for young adults, and “Courageous Creativity: Advice and Encouragement for the Creative Life.” She’s a National Book Award finalist and two-time Utah Book Award winner. Sara also hosts and produces the This Creative Life podcast. She has lived with diabetes for more than a decade.
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