Diabetes, A Disease of Regret and Guilt

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If you live with diabetes, you probably have a very intimate relationship with regret. Because every meal and every bolus can be an opportunity to make a decision you won’t be happy with later.

I’ve realized that for me, diabetes regret is almost always immediately followed by guilt.  I regret a poor food choice I’ve made and then feel guilty about the resulting blood sugar chaos.  I regret ignoring my CGM alarms, and then feel guilty when my husband has to finish cooking dinner while I treat a low.  I regret not getting a workout in, and then feel guilty when my finger-sticks reveal high numbers.

In my almost 38 years with diabetes, my largest amounts of regret and guilt are around my college years.  I regret how little care I put into my diabetes management.  I regret that I didn’t check my blood sugar.  I regret that I ate and drank whatever I wanted.  I regret that I didn’t schedule any appointments with my healthcare team.  I regret that the only diabetes thing I did in college was take insulin.

However, the heaviest guilt isn’t around the things I didn’t do.  It’s around the consequences that haven’t happen to me.  It’s something along the lines of complication’s guilt.  I am here, alive and well, even after those years of neglect.

I remember the scare tactics used on me when I was young.  The promises that if I didn’t take care of myself, if I let my blood sugar run high, if I snuck those cookies and chocolate bars, the consequences would be severe.  I’d go blind, I’d lose limbs, my kidneys would fail, I’d die.  Sure, those threats scared me.  In fact, I saw all of that happening to my aunt who had diabetes.  She was always sick and weak, and although she handled it all with grace, it was clear that she suffered.  We lost her to those complications when I was a senior in high school.  I witnessed it all first-hand, but I never believed that if I worked hard at managing my diabetes I could avoid this fate.  Instead, I believed that this was my future, and nothing I did would change that.  So, I didn’t even try.

Yet, here I am about to turn 50 years old in May.  The complications that I was sure would hit by the time I turned 25 haven’t knocked on my door yet.  No retinopathy, no neuropathy, no kidney failure.  So far I’ve only dealt with a bit of frozen shoulder.  And of course, I’m thankful for that.  But also?  I feel incredibly guilty.

I have friends and acquaintances who’ve racked up fewer years with diabetes and have worked much harder than me.  And yet they are battling all of the complications I have managed to avoid.  As often is the case with diabetes, it just doesn’t make sense.  It really isn’t fair.  It makes me regret those years that I neglected myself, and it makes me feel so guilty that I’m not paying the consequences.

The thing about guilt and regret is that they really aren’t very productive.  I can’t change what happened in the past, I can only change how I live my future.  So, while I do remember the things I regret and use them to motivate me to do better, I try not to dwell on them too much.  Yes, I’ve made many mistakes in the past, and I’m sure I’ll make plenty more in the future.  The best thing I can do is learn from those mistakes and move on.

Karen Graffeo

Karen Graffeo has been living with Type 1 diabetes since 1979, and she created her blog, Bitter-Sweet, in 2008.  Two years later she founded Diabetes Blog Week, an annual event aimed at uniting the diabetes blog community.  She recently joined the DiabetesSisters staff as Program Manager.  Karen lives in Connecticut with her husband and the worlds most adorable cat.

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Valerie HeffronBeth KemptonRick Phillips Recent comment authors
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Valerie Heffron
Valerie Heffron

I know what your talking about. I have had the disease 46 years. I lived with my Diabetes the same as you, I just could NOT turn my whole life over to managing it. I have none of those dreadful complications I consider myself very lucky. Words are powerful so I don’t torture myself and more. Guilt is a useless feeling and it is living in the past. Regret is useless thinking. You have taken care of your diabetic life the best way you could, and you know that. It is a lonely disease, we usually have no one who… Read more »

Beth Kempton
Beth Kempton

Diagnosed at the age of 8, it took me until I was almost 30 to really begin taking care of myself. I do regret that, but mostly I am very very thankful that my complications so far have been minimal (2 frozen shoulders!). Don’t know why or how, just grateful! So leave the guilt behind because you can’t change what’s in the past, nor see into the future – we have to live and enjoy today!

Rick Phillips
Rick Phillips

Karen, I suffer the same type of regrets. Heck i didn’t see any doctor for over 15 years. Yet I only have a couple of complications. I know by all that is right I should have more; many more.

So how to reconcile this guilt? As a friend of mine in the RA community says, live forward. After all what real choice do we have? Not much.

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