Things to Know if You’re Newly Diagnosed as T1D

  1. This isn’t a what-do-do article. It’s more of a what-I-wish-someone-had-told-me article that I’d write to my newly-diagnosed self in the past.

As such, it’s not intended as medical advice. Now that that’s out of the way, here’s what I’d tell me:diabetes

1. It’s not your fault.

You didn’t cause this yourself. Keep in mind that there are literally now half a dozen reasons why your pancreas may have gone on permanent strike.

If you’re type 1, it’s a bit more like your pancreas walked into it’s boss’s office and gave him a good dressing down before throwing the remainder of your work in the trash and using his desk as a restroom. If you’re type 2, it’s more like one day you called in sick, the next day you were late, the third day you had a “doctor’s appointment”, and by the end of the week you just weren’t coming into work any more.

The point is, the reason is biological. You didn’t eat your way into being diabetic. You couldn’t have avoided it by walking, by taking chromium picolate or turmeric or some other home remedy.

It’s a disease.

You know, like Sjogren’s disease, celiac, Crohn’s disease, Hashimoto’s, lupus, or rheumatoid arthritis.

In fact, it’s a LOT like those diseases, since, like them, type 1 is an autoimmune disorder.

You don’t see someone with Crohn’s blaming themselves for having to take Remicade or undergo invasive gut surgery.

Go ahead and grieve for your old non-diabetic life.

Then snap out of it. You have a new, more complicated life to live, and it’s going to be like driving a stick shift — difficult, and very requiring of your attention.

2. You may still be producing insulin… for now.

This part confuses folks, and it’s kind of hard to explain, but… here goes.

First, there are two tests that should always have been conducted if your doctor suspects diabetes.

And they FREQUENTLY get it wrong and misdiagnose, which can be deadly.

One test is the GAD antibody test. GAD stands for Glutamic Acid Decarboxylase. This site explains what it does. But the bottom line is, if you’re producing GAD antibodies, then you’re autoimmune, and you have type 1. EVEN IF you’re still producing insulin. It just may be that your pancreas is fighting for its life and not quite dead yet.

The upshot of it is that if you’re GAD positive (which means you’re type 1) AND you’re still producing insulin, you may need very little exogenous (literally, coming from outside [your body]) insulin for a while — maybe even months or years — until you are completely dependent on it.

When that moment comes, it comes. It’s not your fault, you didn’t bring it on through bad diabetes management, you’re not suddenly doing a worse job of control, or anything like that. Your pancreas just finally gave up.

The other test is the C-peptide test. Insulin breaks down so quickly in the body that you can’t test for its presence. But a side effect of the body’s producing insulin is the presence of C-peptides. This article explains it well. If you test positive for C-peptides, then you’re still producing insulin.

A lot of folks get confused about what the two tests indicate. The old way of defining type 1 and type 2 had to do with the production of insulin and glucose tolerance. Experts used to claim that if you were producing no insulin, you were type 1, and if you were producing some insulin, you were type 2. It was only after a while that folks realized type 1 was an auto-immune disease.

So here’s the deal. You can be type 1, which means you have the autoimmune disease type 1 diabetes, and still producing insulin. You can be type 2 and taking insulin, but have no signs of GAD antibodies that indicate the presence of type 1. You’re still type 2. Or you can be like me, producing no insulin AND testing GAD positive.

Have your doctor do BOTH tests.

Regardless of whether you’re still producing insulin, if you’re GAD positive, you have type 1. If you should be so lucky as to produce insulin, enjoy it while it lasts. This period of brief respite in which you can enjoy a semi-non-diabetic life for a while is called the “honeymoon period.” And if your sugars are more normal than the diabetic guy next to you who’s 20 years older, try not to smirk. You’re not actually managing your diabetes any better than him — you’re just honeymooning.

When the honeymoon’s over, it will get harder. Which brings us to….

3. Embrace the suck.

You will have to count every carb that enters your body, or regret not counting it. You will get good at calculating bolus amounts for food you eat, or you will end up eating the one and only thing that you know how to dose for, at exactly the same time every day. Simple things like waiting for food to be served at a restaurant will suddenly become life-or-death moments when you dose for food that’s delayed or lost in the kitchen and then have to order an emergency full-sugar Coke.

Low and high blood sugars will affect your ability to think clearly at work.

Your medical bills will be bigger than many other people’s. You will have days where your blood sugar is so high that you feel like you can’t move, or so low that you fight to stay conscious enough to eat. You may see the inside of an ambulance more than once. And you will face the judgment and prejudice of people who think you have the disease because you ate a whole birthday cake.

You will face discrimination at school or work.

You will have to educate others on what is and isn’t appropriate, what you can and can’t handle, and what is and isn’t helpful in the moment — all while you’re having your worst blood sugar moments.

That’s your burden. You can let it drag you down, or you can correct the lows and highs as beset you can and strengthen yourself to carry it on your back while getting on with life.

When you succeed — at anything — chances are good it will be despite the disease, with “one hand tied behind your back testing your sugar.”

You will find a new tribe of over 1.5 million other people who are living with the disease. Thousands of us are seeing just what we can do despite it all.

Just go to Google or Facebook and search for “diabetic athletes.” Even if you’re not an athlete (yet), these are people who aren’t drowning their sorrows in a bag of Ho-Hos. Mine that positivity.

4. Learn the science of balancing food, insulin, and exercise.

That means enlisting the help of not just your endocrinologist, but of a DNE (diabetes nurse educator), CDE (certified diabetes educator), and / or nutritionist in teaching you about “exercise equivalents” — in other words, how much exercise of a particular type drops your sugar like a particular dose of insulin. Talk to other type 1s who have learned, and conduct your own carefully controlled experiments.

It means experimenting with fueling strategies for any type of exercise — including walking the dog — to ensure you don’t go low.

It means learning to count carbohydrates and calculate dosages based on what you eat and how long ago you got your last dose (pro tip: this is easier with an insulin pump).

It means testing, testing, testing all three of those factors on training days.

It means testing them AGAIN when you change sports, intensity, or some other factor. For instance, swimming tends to be pretty aerobic and can drop blood sugar faster than running, which can drop it faster than cycling. Anaerobic exercise like strength workouts and intense sprints can raise blood sugar. Stress (from intense workouts or other factors) can also raise blood sugar. So, for example, high intensity cardio, sauna sessions, hot yoga, or running ultra long distances may raise your blood sugar, while swimming or running at a normal distance and pace may have the opposite effect.

A good rule of thumb: if you don’t know what a workout’s going to do to your sugar, take it in little bits, so you can adjust your strategy. Don’t change more than one thing at once, and don’t change it by more than 15% at a time.

5. Learn about glucagon.

Or actually, make sure your spouse, partner, or close friend does.

Because one day, it will save your life.

You’ll probably know before you need glucagon that you’re low. You’ll feel anxious, very sweaty, and lightheaded. You’ll feel panicky. You won’t be able to think or speak in full sentences without getting distracted by… oh, look: a butterfly!

You’ll probably eat something with sugar in it.

Probably. But you can go low in your sleep. You can go dangerously low if you confuse long-acting insulin with short-acting. You can go dangerously low if you “stack” doses nearly on top of each other, forget to eat, or eat later than you thought after dosing.

That’s where glucagon comes in.

Glucagon tells the liver to release glycogen, which the body uses to raise blood sugar to safe levels.

There’s a good chance you’ll already be unconscious and depending on that friend to read the instructions on the glucagon rescue kit when their hands are shaking.

Before than time comes, tell them this: it’s very hard to kill someone with glucagon. It’s far more likely they’ll die if you DON’T give it to them.

As a side note, dumping glycogen is also what happens to marathoners when they “hit a wall” and then get their second wind.

That’s why I call glucagon (which forces a glycogen release) “liquid marathon.”

6. Remember, your blood sugars are just data.

I know, you’ll forget this one as soon as you close out this window. But please, don’t.

If you fall into the trap of letting your self-worth be tied to your blood sugar, you’ll be so wrapped up in self-blame that you won’t learn the valuable lessons about what not to do next time. If you didn’t dose correctly, you’ll know. Meters don’t usually lie (well, unless you have something on your fingers). CGMs (continuous glucose monitors) are fairly reliable except near the extremes. Turn yourself into a data geek.

Find out exactly what happens when you eat half a 25g carbs small Snickers bar. No really, I know, your sugar will go up, but wait until you don’t have any insulin on board, eat it, wait, and record what happens (or watch it on your CGM): how long it takes for your sugar to spike, how long it spikes, and then… gradually dose until your sugar’s normal. That’s how many units of insulin it takes to cover the half candy bar. Now you know.

Two VERY important things: 1) don’t just guess — overdosing can be dangerous, so test in very small increments. 2) NEVER “stack” doses (i.e., getting them rapidly, one after another) because it can multiply, not add, the effect of the insulin.

Anyway, you get the point. Your blood sugar readings are just data. Remember that.

7. Don’t confuse the fight with rebellion.

I’ve seen people who were so frustrated about having diabetes that they went and dug in at Cheesecake Factory, just to show the disease who’s boss.

Guess who actually IS the boss in that situation. Yep, you got it, diabetes.

Diabetes doesn’t give a damn about you. Go down its dark alleyways and it will take you down like a street thug.

If you really want to fight the disease, go fundraise for a cure. Spread the word about the need for a cure, for advocacy against school and workplace discrimination, for equal access to healthcare.

Show diabetes that you are in good control (don’t worry about perfect), that it will NOT keep you from running a marathon, learning to kayak, or enjoying your granddaughter’s birthday.

And don’t give up fighting.

8. Don’t accept others’ idea of what you’re capable of.

You know what? There are actually some things you can’t do fully with type 1. You can’t usually join the military, and you definitely can’t serve in a war zone.  If you’re a long distance truck driver, you have to demonstrate very, very good control, with no history of low blood sugars that might cause you to take out half of Interstate 95 if you lose consciousness.

Usually, there are some very good reasons for the few restrictions that must exist.

Others are simply preconceived notions. For instance, when I was diagnosed in 1972, my school principal and coach told me I shouldn’t take gym class because of the risk of hypoglycemia. Sure, there’s a risk. But there’s also a risk from not exercising. They punted — they didn’t want to deal with the problem, so they decided I simply wasn’t capable of working through it either.

Resist that. Unless the law prevents you from doing something, figure out how it can be done safely, and work to educate others and help them accommodate your medical needs.

Other obstacles are mere hurdles.

If you’re going to do an Ironman event, you need a waterproof insulin pump, or a strategy for lowering your insulin dose prior to the race, or both. If you’re a really good athlete, you MAY need a Therapeutic Use Exemption to allow you to take insulin during the race. You’ll need to pay special attention to fueling, more than any other athlete on the course. But once you’ve gotten that out of the way, there’s nothing short of a bent rim on your bike that’s stopping you from getting that M-dot tattoo.

9. Don’t create your own psychological obstacles.

When I first started becoming physically active, I was very afraid of low blood sugar episodes. And you should be — they’re dangerous! But it’s possible to go so far out of your way to avoid one problem that you create another. Always letting your blood sugars run high or avoiding exercise can aggravate the inflammation that’s already a part of your autoimmune disease and lead to long-term complications like retinopathy.

You MUST face your challenge and not run from it. You HAVE to figure out how to avoid lows while still staying in tight control.

Yeah, I know it’s hard. And you’re almost certain to get it wrong a few times.

My advice: keep getting it wrong until you get it right. Make yourself a promise to write down one thing you learned each time you make a mistake, and talk your strategies over with someone who’s supportive and understanding enough to watch your back while you take those small, calculated risks toward better control.

Don’t decide ahead of time that you will never be able to head out the door with a blood glucose of 120 mg/dl and enjoy your jog. Decide instead how you are going to plan for it (take a source of sugar with you!), and amaze yourself by pulling it off successfully.

10. Find your tribe online.

Like it or not, type 1 diabetes defines you. I know folks like to say that’s not true, but it does define you.

HOW it defines you is up to you. As the saying goes, “you can make it your excuse, or you can make it your story.”

When you go looking for others like you, here are a few tips:

  • Make sure there’s someone you can learn from / get help from
  • Make sure there’s someone you can teach / help
  • Make sure it’s not just a bunch of complainers
  • Have each other’s backs

Your t1d tribe is going through the same struggles as you are. Some are winning, some are losing, and some are just staying in the game, but they’re all people who recognize what you’re going through and have sympathy for some aspect of it.

Count on being told sometimes that you’re doing fine, even when you feel you’re not. Count on getting your butt kicked into gear when you’re feeling sorry for yourself. And count on making some lifelong personal friends who will do both over the decades you will know each other.

Yes, it sucks to have type 1. But there’s never been a better time to have it — the tools are numerous and fantastic, the research is promising, and thanks to online communities of thousands of people living with the disease, there’s almost always a positive example to follow.

Follow it, until one day, when you’re no longer dwelling on it, you discover you have become that example.

And remember, if you are victorious over type 1 for even just a day, you’re a #Diabadass.

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