Everything You Know About Diabetes Is (Probably) Wrong

It happens in movies and on TV all the time. A bad guy detains a group of innocent people. “You can’t keep us here!” someone declares. “My daughter is a diabetic! She needs her insulin!”

“Don’t worry, lady,” the villain says. “I’ve got a chocolate bar.”

At that moment, millions of diabetics watching across the world silently (or not so silently) curse everyone involved with the production. We know that promoting misinformation like this is dangerous.

What I’m about to tell you can save a diabetic’s life. Are you ready? I’m going to need you to remember this:

Insulin lowers blood sugar. It’s used to treat high blood sugar.

Sugar raises blood sugar. It’s used to treat low blood sugar.

Insulin and sugar are not interchangeable, they’re opposites. If a diabetic loses consciousness due to low blood sugar and you inject them with insulin, they can die. If they don't have their insulin and you make them drink juice, they can die.

Once you get this straight, you and I can be friends.

I got type 1 diabetes at the age of 8, when I began exhibiting symptoms such as weight loss, constant thirst, and frequent urination. My concerned mother took me to the doctor where I was quickly diagnosed. So, I was in third grade when I had no choice but to learn all about what diabetes is and how it works.

That’s why I’m confident that all you adult readers out there can handle the information I'm about to lay on you.

Insulin: What It Is and Why We Need It

Insulin is a hormone that the beta cells of a healthy pancreas creates in response to glucose hitting your bloodstream.

Your body breaks down the food you eat and turns it into glucose, which enters your bloodstream to reach every cell in your body. The cells use glucose as fuel. But in order for the cells to use the glucose, they need insulin.

Think of the glucose as people coming home from work. All they want to do is get to their nice cell houses and plop down in front of the TV. But when they get to the door, they discover they have no key. They’re locked out.

Get it? Insulin is the key.

Anyway, now the glucose people are camping out in the blood streets, crowding the vessels and causing major blood traffic jams. The street cleaners are trying to flush them out through urine by making you super thirsty, but it’s not enough.

Okay, this metaphor is getting a bit unwieldy. What I’m saying is, our bodies need insulin to derive energy from the food we eat.

To make matters worse, when the cells don’t get the energy they need, our bodies assume we simply haven’t been eating. It switches to breaking down body fat for energy. Glucose doesn’t have any significant waste products when it’s used for energy, but fat does—ketones.

Ketones are an acid that everyone creates when they lose body fat, but normally, the process is slow and the ketones will be present at such low levels as to be harmless. A person dieting to lose weight may have elevated ketone levels between 0.5 and 3.0 mM.

But for a diabetic who isn’t taking insulin, the ketones in the blood can reach concentrations of above 10.0 mM, which results in a condition called diabetic ketoacidosis (DKA). It can be deadly.

In type 1 diabetes, the immune system attacks the insulin-producing beta cells on the pancreas, which destroys their ability to make insulin altogether. We have to inject it or we die. (We’ll get to type 2, the more common kind of diabetes, in a little bit.)

But Why the Heck Do Some People Get Type 1 Diabetes?

If you’re anything like me, right now you're asking yourself why the immune system of a type 1 diabetic decided to attack the insulin-producing cells in the first place. What a jerk of an immune system, right?

I don’t have a satisfying answer because we really don’t know. When it comes to developing diabetes, researchers have found plenty that correlates with increased incidence, but nothing that definitely causes it.

• The most promising research into causes relate to a pesky human leukocyte antigen (HLA-DR3) complex found on the 6th chromosome that shows a strong genetic marker for increased likelihood of becoming an insulin-dependent diabetic. But fewer than 10% of the people who have the HLA-DR3 complex goes on to develop diabetes, and not all diabetics have it, so that’s not necessarily it.
• A severe virus that kicks the immune system into overdrive may increase incidence of type 1. In fact, there have been reports that diabetes cases have risen since the COVID-19 pandemic began. But I never suffered from the German measles or any other debilitating virus before my body decided to knock my pancreas around, so that’s not necessarily it either.
• People who live in warmer climates get less type 1 diabetes than people who live in cooler climates. So maybe it has to do with how much vitamin D kids get from playing outside, or maybe it has to do with how children who spend more time playing indoors with others will pass viruses around easier. Or maybe this is just one of those mythological tricks the gods play on us. “Haha!” Zeus mocks. “Behold, you shivering mortal! Watch as I strike your pancreas so you’ll be injecting insulin for the rest of your life! Hahaha!”
• Some say drinking cow’s milk as a child makes people’s bodies freak out. “Hey, you’re not a baby cow, why are you drinking this foreign substance?” the body objects before throwing a temper tantrum and taking it out on the pancreas. But this explanation never made a ton of sense to me because kids eat all kinds of weird stuff without going all diabetic about it.
• Older siblings are more likely to get it than younger siblings.
• Children who weren’t breastfed have slightly higher incidence.
• Kids born to older parents get type 1 a little more often than children of younger parents.
• Certain seemingly random geographic areas have concentrated numbers of cases.

I cannot emphasize this enough. We really don’t know. All these reasons show correlation, but none of them correlate strongly enough to be definitively listed as a cause.

Personally, I try not to blame my immune system. I'm sure it did its best and didn't mean to hurt me. It probably thought those beta cells were a legitimate threat, sort of like a cat who attacks cell phone charger cords. The kitty doesn't realize all she's doing is unplugging your phone and preventing it from getting charged. She thinks she helped.

My overeager immune system believed those beta cells needed to be destroyed to keep my body safe. It didn't know those actions would mean I’d have to think like a pancreas for the rest of my life.

The Two Types—Your Grandma Probably Has Something Different

So far, I’ve told you about type 1 diabetes, but type 2 diabetes is far more common. Chances are, if an older person in your life has diabetes, it’s type 2. The US Center for Disease Control estimates that less than 10% of diabetics are type 1.

Type 2 diabetes is caused by insulin resistance. That’s when your body still makes insulin, but you cannot use insulin effectively to regulate your blood sugar. Insulin resistance is caused by excess fat in your body, especially in the abdominal area, a diet high in processed food and/or saturated fat, and inactivity. There seems to be a genetic component to it as well.

Type 2 diabetes can be treated with medication to lower insulin resistance, or by overhauling your diet and lifestyle to reverse the mechanisms of insulin resistance. Some folks with type 2 inject insulin, but it's nowhere near as effective as it is for type 1 diabetics because resistance, by definition, makes using insulin difficult. As a result, people with type 2 diabetes who inject insulin tend to use far more insulin than type 1 diabetics who make no insulin at all.

Chances are, your grandmother or great uncle with diabetes has type 2, unless they’ve had it most of their lives. Type 1 diabetes largely appears in people under the age of 40, with the vast majority of diagnoses between the ages of 4 and 14. It’s not impossible that your elder relatives have type 1, but if they don’t inject insulin, they are type 2.

In case this isn’t clear, when someone tells you they have type 1 diabetes, it is not appropriate to respond by saying, “My grandfather had diabetes. He died.”

First, because that’s just rude. It really should be obvious, but you’d be surprised how often I’ve gotten this response. And second, because we likely don’t have the same condition, even though they’re both called “diabetes.”

Sometimes when I explain the difference between types 1 and 2 diabetes, people respond with some variation of the comment, “Sounds like you got the bad kind.” I understand why they think that, since I make no insulin and type 2 diabetics do make insulin.

But I’d argue that for the most part, neither type is better than the other. I shudder to think about the unpredictability people with type 2 live with. The common drugs they take to reduce resistance, such as metformin, are inexact and have side effects insulin doesn't have, such as headaches and nausea.

Plus, in theory, I can eat whatever I want, as long as I take insulin to counter it. If I wanted to, I suppose I could eat nothing but s’mores. No doctor in their right mind would approve of that diet, but my diabetes wouldn’t hold me back from it.

On the other hand, someone with type 2 diabetes really needs to watch what they eat all the time if they want their blood sugars to be within the normal range to avoid serious health complications.

And yes, if I ate nothing but s’mores, chances are that over time I’d develop insulin resistance and get “double diabetes,” where I'd have both types 1 and 2. One type is more than enough for me, thankyouverymuch, so I’ll stay off the all-s’mores-all-the-time diet, no matter how tempting that is.

You Have Insulin You Inject. Why Aren’t You Better?

My body doesn’t make insulin, so I inject it. Easy peasy, lemon squeezy, right?

Wrong. Unfortunately, insulin dosing is a full-time job. A pancreas may be brilliant at giving bodies exactly the amount of insulin they need, no more, no less, but I am not a pancreas.

The problem is that too much insulin is incredibly dangerous also.

Ideally, our blood sugar should be between 70 and 140 mg/dl (3.9 and 7.8 mmol/L, for you rational countries that use the metric system). Our cells are greedy for energy, especially the ones in our brains, and they require a steady supply of it. When blood sugar drops too low, it can cause intense reactions that range from minor like hunger and sweating, to major like losing feeling in the body, delirium, seizures, and passing out.

This is particularly dangerous during the night. If I’m awake and I go low, I can feel it and I eat something. For me personally, the first sign of low blood sugar presents itself as confusion. I’m a big reader, and if I find myself having to reread a sentence to understand it, it’s time to check my blood sugar. I can also experience intense hunger pangs that drive me to pop a couple glucose tablets posthaste.

But if I’m asleep when I go low, I’m lucky if I have a horrifying hypoglycemic nightmare that wakes me up. Low blood sugar while sleeping is the single most dangerous short-term complication for type 1 diabetics. A severe hypoglycemic (low blood sugar) reaction can cause “dead in bed” syndrome, which accounts for around 6% of deaths of people with diabetes who are under the age of 40.

By comparison, diabetic ketoacidosis (DKA), accounts for 2% to 3% of deaths for all diabetic patients of any age. Ultimately, that equals a far greater number of deaths from high blood sugar than low, but severe lows are still a significant concern.

Both high and low blood sugar can cause a dangerous medical event, but type 1 diabetics generally don’t die from our condition. As long as we have access to insulin and supplies, we can live a relatively normal life, albeit one with constant carb-counting and mental math.

Sadly, insulin doses aren’t consistent from person to person, or even from morning to night. They fluctuate from person to person. Anything from exercise, to mood, to the fat/protein/carbohydrate ratio in the food we eat can affect the dose.

It’s time for another one of my unwieldy metaphors, folks. Think of controlling diabetes as a guy with a parachute jumping out of an airplane and being asked to land on a bullseye on the ground. Except, he shouldn’t hit the inner rings of the bullseye, only the outer rings.

The inner rings of the bullseye represent low blood sugar. The outer rings are a good sugar between 70 and 140 mg/dl. And outside of the bullseye is high blood sugar.

All kinds of stuff can affect where our jumper lands. The wind, the altitude, the ripcord timing, and so on. It’s the same for blood sugar. So much affects it, landing on that bullseye (but not in the middle!) is not easy and we won’t always be successful.

And in this metaphor, all this guy ever does is jump out of planes. He spends all day every day trying to land on the outer edge of the bullseye because when he's not standing in the right spot, he doesn't feel his best.

No matter how much he works at it, it's impossible for him to land there every time.

And That’s Okay. We Don’t Need to Be Perfect

Most of the time, fixing a high blood sugar event is as easy as injecting some insulin and fixing a low blood sugar event is as easy as drinking some juice.

I’m not trying to say diabetes is easy. Far from it. It’s a constant struggle that we never get a break from. High and low blood sugars feel bad and they interfere with our moods, mealtimes, and general sense of well-being.

But it’s not always an emergency. There’s no need to worry about us if our sugars go low or high from time to time. That’s the life of a diabetic. Don’t treat it like a crisis, please. Support us and listen when we need to vent, but don’t feel you need to solve this problem for us unless we ask for help or are unresponsive.

As of 2010, studies showed that people with type 1 diabetes had an average life expectancy that is 12.2 years less than the general population. But that was over a decade ago, and since then, technology has improved and many (though, sadly, not all) people with diabetes have switched to using insulin pumps and continuous glucose monitors that communicate with each other to prevent both severe high and low blood sugars. As more people get access to such devices, life expectancies will continue to improve.

In the meantime, we’re all doing the best we can to keep the diabetes under control. We just have one favor to ask you:

Please, do not offer to get us a candy bar when we say we’ve forgotten our insulin kit and do not grab our insulin kit for us when we say our blood sugar is low!

And if you see them mess it up on TV, commiserate with us. It’s not just annoying—it's drop dead annoying.

If you liked this article, please support the author and her expensive insulin habit by sharing it or giving her a tip! And she always appreciates a ♥️ as well. Thank you for reading.