Revisiting a post from October 2012 about that concept of, “I’m fine.” Because, even though I have diabetes, I am fine, but there is that … thing.
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“You have diabetes? You seem fine.”
“I am fine.”
On an average day, diabetes falls under the “annoying but tolerable” category. I test my blood sugar, wear any combination of continuous glucose monitoring device/insulin pump technology, do the insulin-to-carb math, eat decently, exercise as often and as hard as I can … blah, blah, blaaaaaaaaah. For the most part, I don’t see extreme hypoglycemia or excessive highs, and even though I see bits and pieces of diabetes in so many of my daily moments, it’s not something that keeps me from pursuing the better parts of the day.
But on some days, diabetes falls into the “eff the effing islet you refused to ride in on” category. Those are the days when my infusion set cannula kinks up underneath my skin and sends my blood sugar cruising into the 400’s. Or the days when a blood sugar of 38 mg/dL serves as a sweaty and panicked wake-up call at two in the morning. Or I let my brain wander around the fact that I’ve had this disease far longer than I’ll ever have anything else, and I fear the impact of these fluctuating blood sugars on my quality of life, and longevity, going forward.
It’s this weird dance, the one between feeling like diabetes profoundly affects my day-to-day health, both emotionally and physically, and the feeling that diabetes is just a blip on my daily radar.
“You seem fine.”
I am fine. I think? I have a chronic illness – a disease – that compromises the function of my pancreas to the point where I need synthetic insulin daily, and even with dedicated management, I may see serious and debilitating complications in my lifetime. That’s part of the dance – feeling and seeming fine and actually being fine, even though my body is dealing with something serious every moment of every day.
Is it an invitation for a pity party? Nope. But it’s a reminder that even though I feel fine, and I mostly am “fine,” there’s a part of me that permanently needs tending to, and ignoring it only leads to tougher roads. The lows, the highs feel like they’re ships passing by, but what they may be leaving in their wake scares me. I don’t live with any difficult diabetes complications at the moment (aside from closely-monitored and currently non-progressive retinopathy), and my A1C is at a comfortable constant, so diabetes does feel quiet and well-behaved at the moment, even after twenty-six years. But I know what it can do, and has done, and what it’s capable of.
“I am fine.”
It doesn’t mean I want people to ignore the severity and pervasiveness of this disease. I don’t want people who might be thinking about donating their time, energies, and finances to type 1 research, funding, and advocacy to be deterred by the fact that sometimes we look fine. What those outside of this condition need to understand is that this perception of “fine” is all relative. One day you can be fine, and the next, things can be deeply and profoundly changed.
For November, the focus of the nation (and some parts of the world) will be pointed to diabetes. Diabetes will be in headlines, and on television shows, and health and mainstream media websites alike will turn their attention on the disease so many of us live with and care for every day. It’s in those moments when we need to show the world that even though we seem fine, we still need better treatments and a cure for this mess. Advocacy is important, and we can make a difference in diabetes in our lifetimes. Fine is status quo. Fine is living with insulin therapy. Fine is tolerating stereotypes instead of changing them. Fine is waiting patiently for things to change.
But we can do better.