My husband and I are at a social gathering, when the talk turns to a woman who died of complications of diabetes. Our eyes meet, and I can almost hear a telepathic message flowing between us: Here it comes. And usually it does—a deep sigh, and then the words “Well, you know, she never took care of herself.”
What is it about diabetes that makes people so quick to blame? In my 46 years of living with type 1 diabetes, I’ve heard the “didn’t take care of himself” mantra more times than I can count. It frustrates me because, so often, the person saying it really doesn’t understand the challenges of living with this disease.
When I was diagnosed at age 7, I was told that diabetes was something I could control; it didn’t have to control me. This is a positive thing, yet it’s a double-edged sword, this idea of control. The word comes up so often: “Are your blood sugars in control?” “How do you control your disease?” How wonderful that we have some control over our body—and yet there is a dark side to this. It’s a huge responsibility to try to manage something as slippery as blood sugars. When control is elusive, it’s logical for the person with diabetes to think, “If I’m the one in control, then the problem must lie with me.” Feelings of frustration when things won’t go right in spite of everything one is doing can lead to depression, learned helplessness, and even despair.
Add to this the constant judgment from others, many of whom don’t know what they’re talking about—even health care providers. Once when I was visiting someone in the hospital, a nurse noticed my insulin pump. She said one of her coworkers wore one. Shaking her head, she added: “Unfortunately, she doesn’t take care of herself.”
“Really?” I said. “How do you know that?” (I could just hear my husband thinking: Here we go again!)
“Well,” the nurse said, lowering her voice conspiratorially, “sometimes she eats a candy bar and then just gives herself the insulin to cover it.”
“And why is that wrong?” I asked. The nurse looked flustered. “Well, she’s not supposed to eat candy!”
I asked what her coworker’s A1C was. Of course, the nurse had no idea. I tried to explain that the goal was good blood sugars, and if her coworker was achieving that goal, then it might be OK if she ate a candy bar now and then. The nurse considered this, then pursed her lips. “No, it’s just not good for her.” There was no budging her.
The media dwell on the relationship between diabetes—especially type 2—and lifestyle choices. Not so widely known is that 15 to 20 percent of type 2s are of normal weight. And few people are aware of how everyday stresses can affect blood sugar. The fact is, diabetes is a complex disease with a myriad of variations.
So to people with diabetes, I say: Give yourselves a break! Be grateful that your choices can have some effect on your disease, but be realistic. My husband put it well when someone was going on about a type 1 who ended up in the hospital because he “wasn’t taking care of himself.” My normally quiet husband looked the speaker in the eye and said, “You know, it’s not easy taking over for one of your organs.”
Lori Uponen and her very supportive husband, John, are originally from Michigan, but for 30 years have made their home on Alaska’s Kenai Peninsula, where both are teachers. They have two adult children.
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