“He’s just not been taking care of himself.”
I’ve heard this at least a thousand times, whether from a friend of a person with diabetes or like a few weeks ago, from a parent of a teenager with T1. They complain about how he just doesn’t care and he’s going to suffer the consequences if he’s not careful and that he’s on a dangerous path and they just don’t know how to help him. And these people are almost always coming from a place of concern. They see a person they love with “bad” numbers and they get worried. This is a normal thing to worry, and these folks mean well (usually). But what we have to remember about diabetes management is that there are so many barriers to care, and sometimes, they are not what we expect.
I met this teenager that was supposedly “not taking care of himself.” His parents said he would never tell anyone he had diabetes, even though he was quite active and social in school. He’d given up on his pump and was barely testing anymore. They worried he and his peers were experimenting with alcohol and were terrified of what would happen if things went wrong and no one knew about his diabetes. They felt like they couldn’t reach him and didn’t know what else to do. They were at the end of their rope. Which is how I ended up meeting him solo at his doctor’s office. He’d come to his appointment alone because he and his parents were arguing so badly with him about his diabetes care (or lack thereof) that both sides had enough of each other. He and I sat down to train on his new device together. When I told him I had diabetes too, he finally looked me in the eye for the first time.
“Really?” he said quietly, giving me the once-over, making sure I was a “normal” person. “It sucks,” he added.
I told him that I couldn’t agree more. I told him that it’s a crappy club we’re part of but it’s also not the worst thing to have. At least we get to play sports, travel, go to school, and do everything most other people do. We just have to plan ahead a little more. He told me about all the sports he plays and I told him I’d just run a half marathon, and did karate competitively for five years. We talked about Drake and how the new T.I. song was kinda lame and whether or not Tyga was going to really make it as a rapper.
I asked him what the hardest part about having diabetes was. It was then that he revealed that a few months ago, his pump had failed and set off a long, loud, disruptive beep during a recent sporting event and he didn’t know how to turn it off. It was obnoxious and distracting, and he didn’t know how to silence it. Some kids started making fun of him. He was mortified. Since then, the pump had remained stashed in a drawer, and his desire to be associated with diabetes in any way had fallen to zero. It wasn’t exactly helping him fit it. Bingo. There was the disconnect. Diabetes = embarrassing = not fitting = I’m not doing this diabetes crap anymore.
Barriers to care are social, economic, gender and race-specific. They are big and small reasons, and they are as varied as each person with diabetes themselves. But very rarely is someone “just not taking care of themselves.” No one wants to feel crappy everyday. No one wants to go blind or lose feelings in their limbs eventually. No one wakes up one day and says, “I’d just rather feel awful today and every day after.” It’s quite simply not that simple.
Sometimes, it helps to just ask someone how they are doing, and ask why things feel hard right now. And then just listen. It’s so hard for all of us to do that, diabetes or not. Have I nagged my husband/friend/parent about a habit they know isn’t good for them? You bet. It’s not the easy choice to just listen and support. But when we do, we’re often able to be so much more helpful than when dispense advice or admonishment. It’s that “no judging” thing that really goes a long way. Easier said than done, I know, but it’s worth it to try!