Diabetes Education: Not Just for Doctors to Give

by kerri morrone sparling

I cannot tell a lie: I am not a doctor, or a diabetes educator. No initials follow my name, and I haven’t had a single year of formal medical training. But I have been living with type 1 diabetes for over 23 years, and “doing that kind of time” does contribute to a special brand of expertise – the living-with-it kind. I can't explain every physiological effect that diabetes has on my body or what caused my immune system to take out my islet cells in the first place, but I am intimately familiar with what my own blood sugar highs and lows feel like, and their emotional effect. I also know that even though my insulin is supposed to take effect within 15 minutes, it takes my body more like 35 minutes to start feeling the love. And after over two decades with diabetes, I know just which parts of my fingertips sting the least when I prick them, and how to position my insulin pump just so it isn’t visible under my clothes.

But my level of physical and emotional comfort with my own disease is one thing – explaining it to people who don’t live with it is an entirely different beast. Educating others can be hard because the misconceptions about diabetes are pervasive. For me anyway, things were a bit simpler as a kid. It was always assumed that I had type 1 diabetes and that my condition, though well-managed, was serious. Now, assumptions about the disease and its causes and implications are just part of the ignorance I confront daily. As a 30-year old woman who has been living with diabetes since the second grade, I am now starting to hear, "Oh – so you just take pills and you're fine, right? No big deal?" – when I tell people I have diabetes. Many folks don’t seem to understand that there is more than just their “grandmother’s diabetes,” and that diabetes of any kind is never someone’s fault or something to blame them for.

So what’s a person to do when it comes to educating people about what it’s really like to live with diabetes? That it’s not just as simple as “taking a pill?” I believe it comes down to explaining things patiently, politely, and clearly. “No, diabetes is not from eating too much sugar as a kid – my immune system is to blame for attacking my pancreas." "No, I didn't have weight loss surgery – diabetes can affect people of all sizes." “No, it’s actually not true that type 2 diabetes affects only people who are overweight.” Or, “No, there are also grown-ups with type 1 diabetes. It’s not just for kids.” It can become irritating to constantly correct people (like the ones who assume "that insulin pump is because your diabetes is REALLY BAD"), but I have to remember that this is my normal. Other people outside of this diabetes bubble sometimes aren't as compassionate and understanding as those living with diabetes. It’s just the way it is. They don’t understand because they don’t have to understand.

But I feel that I am doing myself and my personal medical community a service by continuing to respectfully correct these misconceptions. These learning curves don't have to be dramatic or drawn-out discussions, or fights over dinner, or conversation topics that dominate the way I interact with people. They can be as simple as a quick fact check, like, "No, the pump isn't because I have diabetes 'bad.' It's because I have type 1 diabetes, I require insulin hourly, and this device just replaces a bunch of injections. Just a choice, not a benchmark of 'bad.'" End with a quick, friendly smile, hopefully earning one in return from them.

Other times, a quick visual aid can help. "Here is my insulin pump. It doesn't work automatically, but it replaces my need for injections of insulin by streaming my insulin in, subcutaneously, 24 hours a day." Or, "This is my glucose meter. Strips go here, small drop of blood goes here, and a result pops up on the screen in five seconds."

But then there are some people who are willing to go the extra mile and do "diabetes for the day." I’ve conducted this experiment with a few of my former coworkers, and it was an intensive diabetes experience for them. They had taken a very active interest in becoming more familiar with this lifestyle – more than just understanding the "facts" of this disease. They asked questions about the pump, or different insulin types, or what a CGM does. They ask how things "feel." One of my co-workers decided to have "diabetes for the day," which included his testing his blood sugar several times and wearing a pump infusion set (minus the cannula – just stuck to his abdomen for "the feel" of it) attached to a makeshift "pump." He spent the day thinking about carbohydrate intake, blood sugar results, and the constant presence of a device, in efforts to better understand the community he's trying to reach.

Not everyone wants to know so much, and not every discussion allows an opportunity to educate about diabetes. But there are moments that are just waiting for us to jump in and say, “Yes, that’s correct!” or “Actually, it’s more like this…” The more people know, the more awareness can be raised of all kinds. Raising the collective awareness can help others watch their own risk factors for type 2 and maybe prevent a diagnosis of their own, or help identify the symptoms of a loved one. When people understand the different factors and symptoms, they can become better tuned in to their bodies and health, while gaining a better understanding of ours. And it’s not just doctors who can provide this education and raise this awareness. We can do it, too.