Guilt, A Major Diabetes Complication

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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.

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16 Comments on "Guilt, A Major Diabetes Complication"

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Cheryl
What a wonderful way to get the conversation started! I don’t know if guilt is the right emotion. Perhaps it’s more “disappointment” in oneself for choosing the actions described instead of the “by the book” rule regarding the amount of insulin to inject, the correct food to eat, consistent exercise, etc. As you stated very honestly, sometimes Type 1 management is like nailing jello to the wall. I have been Type 1 for 46 years, diagnosed at age 11. I can’t even remember the “before DM” years. I am a successful RN, mother, wife, friend and mentor to many. Karen,… Read more »
elizabeth

thank you so much for sharing this honest and encouraging post! it helps so much to understand what my little girl is going through with her T1D and I feel many of the same emotions as her mama. xo

Erin
Karen I must’ve screamed “OMG I AM this girl!” at least 5 times and almost cried while reading your poignant and accurate article. The struggle is real and it’s nice to see it in writing – makes me feel better to know I’m not the only one, but then it makes me sad to think about how many of us are doing our best to cope with this unrecognized complication! Thank goodness we have social media for support now, I was diagnosed in 1980 and didn’t know one diabetic or even talk to others until I joined Facebook and became… Read more »
Karen

Emily you’re very welcome… I’ve gotten many similar responses to the piece – it seems as though we should all be more gentle on ourselves <3

Emily Patton

THANK YOU!! Pretty much every word of this rings true for me. This is the stuff that people don’t understand and this is the stuff that makes it hard. Thank you for putting words to something so frustrating and so important.

Cheryl

A must read for family members of T1D’s – thank you for putting into words

Ron

Guilt, for what having a disease that is a pain in the rear to manage? I think you are to hard on yourself. Living with this damn disease for the past 24 years hasn’t brought me guilt, but unending depression! Unfortunately depression is rarely discussed when treating Type I diabetes. Ask me how I know!

Ellen

I don’t have type 1 – my 16 year old daughter does, but I can see how much guilt surrounds this disease. I try to be aware of how we talk about things and try to avoid the “shoulds,” “how comes” and “why nots.” But I slip with it, and am glad to have your well-written words as reminder. I’m book-marking this to refer back to. (And for what it’s worth, I think running 240 as a safety net during the most important meeting of the year sounds reasonable and cautious to me! We would have done the same!)

Pam
Karen, I do not have diabetes, but my eight-year old daughter was diagnosed with Type 1 just two weeks ago. I feel guilt thinking I could’ve done something different or got her screened sooner. We ended up in the ER. Best place though. Our current contact nurse gets it. We talked today about guilt. I worry of not getting the numbers right, what happens when she’s not in my care, her being kidnapped and not having medical attention, crazy scenarios. I have mommy guilt and worry. Other people unfamiliar with Type 1, sadly, don’t get it. I hear Type 2… Read more »
Christina

Thank you so much for posting this. I was just diagnosed with T1 about a year ago and have constantly felt this guilt you describe without really being able to pinpoint the reason. Your post makes me feel like I’m not alone in this and that in and of itself is a great help <3

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