I’m a young sales representative with Type 1 diabetes. Last week, I headed into a meeting with an important potential customer for what would be possibly the most important meeting of the year. I’d prepped hours for it and needed everything to be perfect that morning, including my blood sugar. I needed to not have a low right before or during the meeting. So while on another day I might have given a unit or so of Humalog, I decided to let my waking blood glucose level of 240 just ride. I stayed right around there for three hours all told, through a very successful meeting (if I do say so myself). I left the building bursting with pride.
But then right alongside that pride was what overlays of so much of my life: a healthy dose of guilt. Because, I should have given myself some insulin; it probably would’ve been fine. My “diabetes mind” berated me for allowing myself to stay in the mid 200s all morning. “You’re doing it wrong,” was what I heard even louder than “You did that meeting right.”
Guilt is the major diabetes “complication” that isn’t usually discussed enough (often not at all) at endocrinologist’s visits, or even within the shelter of the diabetes community. Diabetes demands 24/7 care, which takes a heavy toll on a person not only physically, but emotionally. And unlike complications like retinopathy, neuropathy, kidney disease which we typically worry about “down the road,” the guilt of not managing our diabetes well enough can develop right away.
Think about it: A week or so after diagnosis, a diabetes newbie is basically on their own managing the chronic disease. Striving to keep blood glucose levels as close to a prescribed target range as possible can feel like trying to nail Jello to a wall. Acting as one’s own pancreas is a second full time job.
As a person who has lived with diabetes for 25 of my 30 years, I often feel like an utter failure when I spend too much time outside of that magical target range. Here’s a snapshot of the constant ticker of shoulds and should nots that run through my mind: I should’ve taken just .25 units rather that .5 units to correct that high BG. If I hadn’t had that last bite of muffin my BG probably wouldn’t be this high. I should have known not to get off at this T stop to walk when my blood sugar was 95. Now I’m low and late for work. Lying in bed at night thinking, “I really should get up and check my BG right now, but being so tired that I fall asleep – only to wake up with a high or a low, and blame myself – I should’ve just run downstairs and checked.
This guilt plagues my everyday thoughts. I feel it when my primary care physician asks how my diabetes management is going. I feel it when a new physician asks the casual and infuriating Is it well controlled? question. I hang my head and tell him that no, my A1c is not 6.5%, or even 7.5%. I sit there, awash in guilt.
I feel it when I’m sitting in a meeting with members of Congress telling them about the necessity of Continuous Glucose Monitors, but not wanting to show the screen of my Dexcom receiver because my BG has yet to dip below 220 this morning.
I feel it when dessert gets passed around at work events and (even though I’ve explained to them before that all I have to do is dose insulin according to how many grams of carbohydrate are in anything I eat) my coworkers think to themselves “Is she supposed to eat that?”
I even feel guilt for things that haven’t even happened yet. For my family, that may have to one day help to take care of me. For tax payers, and for the general public whose insurance premiums may rise if I end up on dialysis or have other health issues due to my poor decisions, my “not-good-enough” care of my chronic illness. Making matters worse, those who don’t live with the disease (or care for someone living with it) usually don’t understand how difficult it is to manage Type 1 diabetes. It can make those of us fighting this daily battle feel very alone.
I recently talked to my sister, who also lives with Type 1, about not being in good enough control. “I’m not a college kid any more, what’s my excuse?” (I admit to having been extremely lax with my diabetes care throughout most of my college years.) She said to me: “I think you assume most other people with diabetes are a lot more well-controlled then you.” I didn’t really respond, because that’s true – even if statistics say otherwise. Or at least that’s how I see those stats through my veil of guilt. More needs to be done to help people with diabetes carry our burden, and our healthcare providers should make it a priority to treat the emotional effects of living with diabetes. Guilt is a terrible and immediate complication of diabetes. It needs to be talked about that way.