Advice Explainers

How To Deal When You’re Diagnosed With Type 1 Diabetes

So you or someone you know has been diagnosed with Type 1 Diabetes. Here, in plain English, is what you need to know.

Type 1 Diabetes (often abbreviated as T1D) is a bummer. If you or someone you care about has been recently diagnosed, I’m sorry.

But diabetes doesn’t have to slow you down. It doesn’t have to end anything. You can still do precisely what you want to do; you just have to understand what you’re dealing with.

Here, in plain English, is what you need to know about Type 1 Diabetes, and how to live with it.

What is Type 1 Diabetes (T1D)?

What Islets of Langherhanslook like.

T1D is an autoimmune disease. That means your body mistook part of itself for a bad, sickly thing, and attacked it. In this case, your body is attacking clusters of cells in your pancreas called the Islets of Langerhans, which create insulin, a hormone that regulates how much glucose (sugar) is in your blood.

Too much glucose poisons your blood, so if your pancreas can’t make enough insulin, you need to inject yourself with artificial insulin to stay alive.

How Much Insulin Should I Take?

Consult your doctor, but in general, every time you eat, you’ll calculate the correct amount of insulin based on the how many grams of carbohydrates you’re eating. This is called an Insulin-to-Carbohydrate Ratio, or “IC Ratio.” For example, my IC Ratio is 1:12. That means I give 1 unit of insulin for every 12 carbs I eat or drink.

What Happens When My Blood Sugar is Too Low?

Low blood sugars (“hypoglycemia”) happen when you have too much insulin in your system. Hypoglycemia you dizzy, anxious, hungry, and probably quite sweaty. In the worst cases, low blood sugars can lead to seizures. Not much fun.

You treat low blood sugars by consuming sugar, and because lows can strike at any time, you should carry sugar with you at all times from now on. Some folks carry glucose tablets, others lug around juice boxes. I prefer gummy bears.

Meet two of your new best friends. Creative Commons photo: Robert Occhialini

What Happens When My Blood Sugar is Too High?

High blood sugars (“hyperglycemia”) strike when you don’t have enough insulin in your system. Since your blood is poison when you’re hyperglycemic, your body tries to replace its fluids, which makes you very thirsty and prone to peeing a lot. Highs, if left untreated, can lead to Diabetic ketoacidosis (DKA), which is dangerous.

You treat highs by taking the appropriate amount of insulin—again, consult your doctor. Drinking water and going for a walk will help the insulin do its work.

Why Did My Body Attack Itself? Why Do I Have T1D?

We don’t really know. Genetics play a role, and viruses can be “environmental triggers,” but science has given us no clear or final answer yet.

What’s Been Taken Away From Me?

Very little. You can still do pretty much anything you wanted to do as a non-diabetic. You can be a doctor, a scientist, an artist, or an NFL player. You can still go hiking, travel the world, and raise a family. You’ll be OK!

Ask Abby Pepper, who biked from coast-to-coast when she was 18 after being diagnosed. People with T1D can do anything.

Could Anything Have Prevented This?

No. This is not your fault.

I’m Feeling Sad, Angry, and Confused After My Diagnosis. Are These Feelings Typical?

Yes! Diabetes sucks. There’s no getting around it. There’s a lot to learn, some suffering to undergo, and a lot of work to do. This means you’ll need to be disciplined and keep your spirits up. But not right away. It’s totally okay—and even normal!—to be sad, angry, and confused for a while. To show yourself that you’re not alone, find a community of diabetics as soon as you can.

Where Can I Find a T1D Community?

You have options! If you’re interested in walks, bike rides, runs, galas, cookouts, etc., The Juvenile Diabetes Research Foundation (JDRF) holds plenty of events. The American Diabetes Association (ADA) does, too. Here’s their calendar.

T1D communities are flourishing online, too. If you want to read personal essays from T1Ds about everything from sports to fashion to diabetes research, I recommend Beyond Type 1 and Type One NationFolks (the site you’re reading!) has a lot of inspiring stories about people with diabetes in its archives too.

If you have specific questions, or just want to get involved with some T1D forums, you can find support groups here, here, and here.

Do I Need a New Doctor?

Yes.

You need to find an endocrinologist (“endo”), who will be your “diabetes doctor,” helping you figure out your treatment, setting you up with a diabetes educator, and writing your prescriptions.

Also, make sure your primary care doctor knows all about diabetes. This might seem like a no-brainer, but I’m wary about this because of personal experience. A few years ago, I moved to a new place and met a new doctor, who asked repeatedly, “Are you sure you have diabetes?” I was pretty sure, after 7 years of the disease. He remained suspicious.

I didn’t go back. You can’t be treated by someone who doesn’t understand your condition.

Diabetes affects every facet of your health. Make sure that your primary care doctor’s knowledge of T1D is broad and deep.

This glucose monitor is one of the gadgets you’ll need to familiarize yourself with if you have T1D. Creative Commons photo: Mike Mozart

What’s the Difference Between Type 1 and Type 2 Diabetes?

You’ll probably have to explain this a lot.

Basically, Type 1 is an autoimmune disease, and Type 2 is not. Type 2 Diabetics develop a cellular resistance to insulin, whereas Type 1 Diabetics lose the ability to produce insulin altogether.

In short, T1D has to do with insulin shortage, and T2D has to do with insulin resistance.

Can I Still Eat Sugar?

Yep! You just have to take insulin for it.

Will Exercise Help?

Very much. While exercise won’t reverse the symptoms of T1D, it will make your body more sensitive to insulin, which is a good and healthy thing.

Are My Children at Risk for T1D?

There’s no genetic guarantee of T1D, just as there’s no genetic guarantee of red hair.  However, the child of a Type 1 Diabetic is more likely to develop the disease than the child of a non-diabetic.

So the answer to this question is “Yes,” but the odds of your children being diagnosed with T1D remain small.

What is the Honeymoon Phase?

For a while, you’ll retain some pancreatic function. That means your pancreas still works a little bit, and you won’t need as much artificial insulin. This period of time is called “The Honeymoon Phase,” and it can last up to a year.

Should I Hope for a Cure?

There’s no cure coming soon, but there are hopeful things on the horizon. Several research teams are hard at work on promising treatments and technologies: I’ll name three.

ViaCyte has engineered stem cells to become beta cells (insulin secretion cells). Their treatment would put a small, semipermeable capsule in the skin of your upper arm that (a) produces all the insulin you need, (b) protects the beta cells from autoimmune attack, and (c) would need to be replaced every few years.

Semma Therapeutics works with “pluripotent” stem cells, which can replicate indefinitely. That’s an exciting quality, because if their treatment works (it’s way too early to tell), you’d have a self-sustaining population of beta cells!

Sigilon Therapeutics has developed excellent capsule technology. They might have the best shot at keeping your new (artificially implanted) beta cells safe.


I’ve omitted lots of important stuff (talk to your doctor!), but I hope the ground beneath your feet now feels a little more solid. Remember, Type 1 Diabetes is nothing to take lightly, but if you’re up to the challenge, you’ll be okay. Get educated, find good doctors, be honest about how you’re feeling, and plug yourself into a nourishing community.

Don’t let this cramp your style! Your prospects are as bright as they ever were.


Creative Commons photo at top by JDRF