Is Fear of Diabetes Complications Getting in the Way?

There it was. In my Twitter feed. From the American Diabetes Association and on World Diabetes Day, no less.

“#Diabetes is a leading cause of blindness, amputation, heart disease, kidney failure and early death. Simple action can reduce the risk. The time to act is now! #WorldDiabetesDay #t1d #T2D.”

As I read these words, it felt like I just got slapped across my face.

The result of poorly-managed diabetes

“Diabetes is a leading cause…” No, no, no. Diabetes is not a leading cause of blindness, kidney disease, or losing a limb. It’s poorly-managed diabetes that leads to those things. And I’m not the only one saying that. Dr. William Polonsky, the founder of the Behavioral Diabetes Institute, gets credit for making this point.

This isn’t to say that the possibility of complications should be dismissed or ignored. But it is to say we can’t live in fear because some complications might happen someday. Anyway, we can’t live in fear if we want to live a vibrant life with diabetes.

Fear gets in the way of diabetes self-care

Fear comes when we perceive something as dangerous or a threat. It triggers the fight-or-flight response in our bodies and minds. In the short term it causes anxiety that throws up mental blinders, making it hard to understand the situation clearly. In the long term it keeps physical and mental stress levels high, which leads to anxiety disorders, weakening of the immune system, and damages the heart, stomach and intestines.

Clear thinking drops away when we feel fear. Anxiousness and impulse replace logic and clearheadedness. We take actions aimed at immediately relieving stress without considering the long term effects.

Fear can lead a person to focus their self-care on avoiding complications instead of truly addressing diabetes. For example, always wearing shoes but not going for a walk. Or making the font on the computer screen bigger every time it looks a little blurry but not getting an eye exam.

Fear can lead a person to avoid getting the care they need because they might not like the result. For example, avoiding an eye exam because they’re afraid of losing a driver’s license. Or not using insulin because they’re afraid of syringes. Or not getting enough sleep because they’re afraid of having a hypoglycemic episode in the middle of the night.

Where do fears about diabetes complications come from?

Fear comes from not understanding diabetes and how to effectively manage it. Fear comes from incomplete and outdated information. Fear comes from not feeling confident in our understanding and actions.

But where does this fear come from? It could be from...

• Doctors who think they can “scare patients straight” and get them to “be good” with stories about diabetics losing a foot or going into a coma and dying.
• A family story or gossip about an old auntie or uncle who got “the sugars” and ended up blind.
• A popular movie showing a young woman having convulsions without warning because of diabetes.
• Seeing someone you care about end up on dialysis, have a heart attack, or go into a coma.

All of these things can happen. But they aren’t inevitable.

Focus on self-care to manage diabetes, instead of avoiding complications

Managing your health, with or without diabetes, is complex. There are a lot of moving parts and dependencies. There is no single straight line from, say, eating healthfully and living a long, vibrant life. But there is a lot of medical research that says diabetes can be effectively managed. And there are a lot of people alive today who have lived long, full lives into their 70s and 80s, even though they have diabetes.

The most effective way to manage diabetes is to think about it as a whole and not go down the rabbit hole of trying to avoid any particular complication. Current medical thinking says the best way to do this is to focus on all the things that go into managing blood glucose levels.

This means monitoring blood glucose levels, eating healthfully, exercising, managing stress, and taking medication. It also means using medical devices and technology available to you. And, yes, it also means foot-checks and dental-checks, and eye exams.

What’s best practice today may not be tomorrow. We need to stay up-to-date on how to best manage diabetes. Anyone who has lived with diabetes for 10, or 20, or 50 years will tell you what they do today is different from what they did when they were first diagnosed. Our understanding of diabetes has improved dramatically in our lifetimes. The medications and tools available continue to evolve and improve.

Doing it all, the best we can

If we only do part of what it takes to manage diabetes, whether it’s the part we find more tolerable or easy or soothing, then any fear we have of complications is more likely to turn out to be true.

People who have lived with diabetes for decades tell us it can be done—diabetes can be well managed. They should know, they themselves have done it.