“We’d Expect to See This…”–Diabetes Complications are Knocking

In a couple of years phrases like “we’re surprised we aren’t seeing more complications” have been replaced with “we’d expect to see this with how long you’ve had diabetes” after a few minor diabetes complications and hiccups. How does one go from being an anomaly to average? 

What does diabetes look like after thirty years?

diabetic retinopathy

For us it’s been a pretty steady flat line with a few hiccups here and there. It doesn’t mean that we don’t worry every time a doctor’s appointment comes around. You know what we mean, that panicked feeling you get when the doctor comes in with the chart holding the results of your labs (aka: life)  in his hands.

Well, this year has been a hiccup year. An overnight hospital visit for the first time in years, the start of gum disease, and now…retinopathy.

The diagnosis was moderate retinopathy. It was a sign that no longer were we able to run, no longer were we young and invincible to a disease that quietly sneaks up on you over the years to show something like this or comes in with guns blazing to ruin a day.

Anytime something happens now, anytime there is a hiccup we’ve come to hear, “we’d expect to see this with how long you’ve had diabetes.” It’s a frustrating phrase. What does it mean when you tell us “we’d expect to see this?” We’re in the prime of our lives. Busy raising young children, balancing a career, and looking and planning towards the future. We’ve never been busier than we are now. To get slammed with a phrase like that doesn’t make you feel like you’re in the prime of your life, but at the end. Is it going to be a downward spiral from here on out? To hear “get your A1C under tighter control” and other similar phrases for ‘prolonging’ what the doctors expect to see feels like the standard answer. Just getting an A1C down to normal range or down an extra couple of points doesn’t eliminate your diabetes or eliminate the fact that you will have complications. That phrase makes me feel that no matter how tight of control, no matter how pretty the A1C, these kinds of complications are “expected.” So isn’t it hard to keep trying sometimes when you hear words and phrases like that?

I went through this with my Dad. Before his heart attack he by all accounts ate pretty good. Was exercising, doing what he should and living the way he should. After his heart attack in his early 50’s, he by all accounts outlived what the doctors said he would by ten fold. We hear stories of this over and over. Working in the medical field I hear amazing stories like this all the time. In statistics I’ve learned to throw out the outliers and focus on the averages. Are these stories we hear just the outliers or are they stories of individuals who float between what the “norm” of health should look like and those who work to eliminate the norm?

It’s frustrating to hear phrases like “I”m surprised we aren’t seeing more problems with how long you’ve had diabetes” just a couple of years ago to “we’d expect to see this.” How does one go from an outlier to ‘what we’d expect’ in just a couple of years?

Diabetes is relentless and easily allows you to feel defeated at times like this. But we are also grateful that we do live in a time when technology is at it’s peak, when there are so many devices to help us maintain a healthy lifestyle. It’s not easy, it’s not fair sometimes but it explains our family. We have learned so much about serving one another, compassion, and patience. It is difficult to teach kids these life lessons, and they have just learned them through learning to care and love their Dad.

Retinopathy? Good luck beating us!

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  1. Oh my gosh, yes, I totally agree!!! I’m coming up on 35 years with T1 and it’s like you expressed my feelings perfectly. I’m so sorry you’re both going through this, but like you said, I’m glad we live in a time when technology and treatments are there to help us. I’ll keep your husband, and you and your kids, in my thoughts.

    • thank you so much for coming forward. (I’m actually one of your closet readers and have been for a long time). thanks so much for letting us know that you also feel the same way. you can feel pretty alone sometimes and it made all the difference in the world today to hear from you. thanks for taking the time to comment and for keeping us in your thoughts.

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