I've had type 1 diabetes since age two. Diabetes education is near and dear to my heart, especially since I went to diabetes camp for 20 years (1999 through 2019).
Let's dive in, shall we?
1. T1D is not preventable
You either get it or you don't. Changing your lifestyle won't prevent your pancreas from attacking itself.
2. T1D is not curable (right now)
It's only treatable. Insulin is not a cure, it's a treatment.
The science community has been telling us that a cure is 5 years away for over 50 years. The closest we've gotten is cell replacement therapy, but that's just trading insulin for anti-rejection medication.
Personally, I'm looking forward to artificial pancreases and stem cell transplants.
3. Yes, I can have sugar
There are only two things I can't have: poison, and cookies made with poison. It's an old joke intended to get the point across that, as long as we correct appropriately, literally nothing is off limits.
I choose not to have sugar because I've found that I'm very sensitive to carbohydrates (sugar), and it's not worth my health to ride blood sugar roller coasters every day.
4. Your grandma's best friend's niece's college roommate's aunt's T1D is not my T1D
It doesn't mean YOU know anything about it.
Having third, fourth, or fifth hand knowledge of someone else's diabetes, and proceeding to tell us how that person lost a limb because of the "diabeetus" is one of our biggest pet peeves.
While we appreciate your concern for our well-being and control, we're more concerned about your lack of knowledge regarding how one is supposed to take care of themselves when diabetic.
Amputations, nerve damage, retinopathy, and all those other lovely "side effects" are from years and years of poor, brittle control.
5. Nothing replaces insulin
Cinnamon, okra water, snake oil #5—none of these will replace my physical requirement for insulin.
Literally nothing besides insulin will bring my blood sugar down from dangerous levels.
Cinnamon certainly has an anti-inflammatory property that improves the stability of blood sugars (mostly in Type 2's), but it's useless as a "holistic, natural medication."
6. My T1D is not my fault
It's not my parents' fault, either. And it's not God punishing me.
I did nothing to get diabetes.
My parents did nothing to give me diabetes.
I did nothing as a two-year-old to deserve "punishment" in the form of a lifelong chronic disease from my God.
Saying that I did, that my parents did, or that my God did is an insult to all four of us.
7. Anyone at any age can get T1D
In the past, type 1 was called "juvenile diabetes." That's fallen out of use because more and more adults are being diagnosed with it.
In addition, it's not something that one grows out of. Can you imagine what it would feel like to have someone say "aren't you a little old to be a diabetic?" if you were diagnosed at age two, like me?
Generally, my answer to something ridiculous like that would be, "Um...no?"
8. It's not always genetic
I'm the first in my family with type 1. My parents are pretty sure it was an environmental trigger, such as my Hepatitis B vaccine.
BEFORE ANYONE YELLS AT ME
I'm going to clarify that I don't think the vaccine "gave" me type 1 diabetes—I was already predisposed to it because of a long history of autoimmune conditions on my dad's side of the family that we didn't know about until AFTER my dad passed away in 2019. I believe the vaccine was the environmental trigger.
In fact, most diagnoses take place in the fall, coinciding with the changing of the seasons. I was diagnosed on 19 September 1995 after feeling sick and looking awful for a few weeks.
9. All diabetes is "the bad kind"
Yes, T1D is the "bad kind." So is T2D. And gestational. And Type 3C. And MODY. And LADA. And all the others in between.
The point? If your body is not doing the thing the body was created to do, it's a bad thing.
Not treating any type of diabetes is deadly. For type 1's it gets deadly a lot faster, but that's not the point. Having diabetes used to be a death sentence before insulin was discovered in 1921.
For type 1 diabetics, we need insulin to live.
So I guess being entirely dependent upon an expensive drug means it's the "bad kind."
10. Insulin prices have caused T1Ds to ration and die
Despite the recent legislation to cap the cost of insulin, nothing has been done yet to cut the list price of insulin, which is the price that matters for the uninsured and underinsured population.
Many T1Ds have had to ration insulin due to the cost and have died because of it.
My absolute WORST POSSIBLE FEAR EVER is losing my health insurance, running out of insulin, and being unable to afford more.
I depend on insulin just as much as I depend on water. Three days without either and I'm a goner.
11. My pancreas isn't actually useless
Only a small portion of my pancreas doesn't work. It still does essential hormonal regulation—it just doesn't produce insulin anymore.
We joke about our pancreases being a useless organ to us, but the reality is that the pancreas does more than produce insulin, though that's what it's known for.
12. Symptoms of T1D mimic flu
Many doctors mistake the symptoms of Type 1 with that if the flu because they share a lot of them. If you or a loved one are in the hospital for the flu, demand a blood test for type 1 diabetes.
It's better safe than sorry to not take NO for an answer from the doctors or nurses.
13. Diabetes is the definition of insanity
You know how the definition of insanity is doing the same thing over and over again, expecting different results?
That's exactly what we have to do as PWD.
No two days are the same. I can eat, drink, exercise, etc., exactly the same yesterday and today but my BGs could be wildly different.
Everything affects BG levels:
- Time I woke up
- How much sleep I got
- What I ate, and when I ate it. Oh, and how long it's been since the last time I ate something.
- Anxiety-triggering events
- Driving, air travel
- THE WEATHER
- Shower temperature, bath temperature, doing hot/cold therapy like cold plunges, cryotherapy chambers, and saunas
- Where you live (the ALTITUDE, for Pete's sake)
- Your environment
14. Carbs are amazing and terrible at the same time
It just depends on where my BG is.
When low (below 83 mg/dL for me), it raises me out of the danger zone.
In the normal range (between 83 and around 120 mg/dL), even a little bit of sugar/carbs will spike me, about 5 grams.
When I already have a high number (140 mg/dL or higher) I'll be spending the next several hours trying to get my number back down if I've just consumed carbs.
15. Exercise can make BGs go either direction
Aerobic (walking, running) generally lowers my number if I'm in range. If I'm high, I have to give insulin in order for the exercise to activate it faster and bring my number down.
Anaerobic (weight lifting, strength training) raises my blood sugar.
As of 2023, I go to both Orange Theory and a local boxing gym. Once a week I also hike the hills around Missoula. I've done a lot of experimentation to understand how my numbers react in any scenario, and I'm also flexible to correct things if I need to.
I'm the weirdo with my phone out in fitness class to make sure I can see what my BGs are doing.
16. Other medications can affect BGs
It's kind of shocking how many drugs raise blood glucose levels. Steroids, anxiety medications like clozapine, olanzapine, risperidone, and quetiapine, even birth control pills, and some acne medications can all cause the BGs to go up.
This, of course, is annoying.
Some drugs, like Metformin, are specifically prescribed because they help to lower the blood sugar.
Whatever drugs you're taking, make sure you know how it interacts with your body.
17. Insulin is a growth hormone linked to hunger and weight gain
I always knew that losing weight as a diabetic was more difficult, but it wasn't until a few years ago that I finally understood why.
Insulin is a growth hormone that, very simply put, makes us hungry.
Read this amazing overview of why society has been lying to you about how to really lose weight: it's about your insulin levels, not your calories.
It's a cycle of eat, inject, drop, eat, inject, drop, eat—and no wonder I was always hungry and never losing weight.
18. It's impolite to ask if I can eat that
Yes, I can eat that. And if it's something you think I shouldn't be eating, please err on the side of me having a darn good reason for eating it.
Even better, just don't ask questions that assume we don't know what we're doing.
We usually do.
19. Yes, pricking my finger DOES hurt
I'm stabbing my fingers with a tiny needle in order to draw blood, of course it's going to hurt.
Sure, we get desensitized to it and used to the routine, but that doesn't kill the nerve endings in my fingers. I generally only use three fingers, because some are more sensitive than others.
FOR THE LOVE OF GOD AND ALL THAT IS HOLY, DO NOT POKE YOUR THUMB PAD. YOU WILL GET NERVE DAMAGE BY DOING THAT.
For me, the index fingers are more sensitive, and generally, the dominant hand is too. I use the middle, ring, and pinky of my left hand for all finger pokes.
20. T1D is an autoimmune condition
This means the body's immune system thought the pancreas's beta cells were intruders, and executed them all before you knew what was happening.
It also means that you're more at risk for other autoimmune conditions, because they like to play together.
That's why we see many T1Ds who also have celiac disease, or Hashimoto's, or other autoimmune conditions besides the 'betes.
I'll stick with just T1D, thanks.
21. No insulin = DKA = syrup blood = D.E.A.T.H.
Ketoacidosis is a dangerous, deadly condition that occurs when there's not enough (or any) insulin in the blood to process the sugar. When this happens the blood basically turns into syrup (TRIGGER WARNING FOR THAT ARTICLE), and the acidity begins eating away at your innards.
It's not fun.
It's essentially starvation of the cells regardless if you're eating.
If there's no insulin to process the sugar, the body can't eat.
22. Ketoacidosis ≠ ketosis
Ketoacidosis, as mentioned above, is the body not having any insulin to process sugar and basically turning the body into a starving acid factory.
Ketosis, or nutritional ketosis, is when your body is running on fat instead of carbohydrates.
The two are not the same, and in fact, nutritional ketosis is the best thing that's happened to my body. The side benefit is that I'm not chasing highs from carbs, and my blood sugars are more stable because of it.
Because ketoacidosis stems from a lack of sufficient insulin and ketosis is just the body burning fat instead of carbs, there's no danger of slipping from ketosis into ketoacidosis unless you're doing something very wrong.
23. Insulin sensitivity varies between PWD
Every diabetic is different.
Some need massive amounts of insulin just to cover 10 grams of carbohydrate. Some only need a little bit of insulin for 30 grams. Usually, newly diagnosed diabetics are in something known as the "honeymoon phase" where the pancreas is still producing a little bit of insulin, so the external requirements aren't as extreme.
As for me, I sometimes need to give insulin to cover missed basal—the steady stream of insulin from my pump during the day that mimics the pancreas's function—for something as short as a shower.
About 3 grams of carb (half of a smarties roll) can bring me out of a low.
It just depends on the person, and it's important to remember that.
24. I can do anything except join the American military
T1D does not hold you back unless you let it.
- There's a Tour de France cycling team made up entirely of Type 1 Diabetics.
- Sean Busby is a professional snowboarder living in the arctic circle, 400 miles away from his pharmacy.
- Eric Tozer is one of the few athletes who has done the 7 marathons on 7 continents in 7 days challenge.
- Tim Krauss of Mammoth Creameries fame is training to climb Mt. Everest.
- Nathan Barden is an ultramarathoner from Australia who also has boxing championships.
- Jason Robinson is a digital nomad and travels the world with T1D.
- Praachi Nagpal won Miss Grand India 2022 and competes on world beauty pageant stages.
Truly, this disease doesn't slow us down unless we let it.
I can't, for safety reasons, go into the American military, but I can climb mountains. I can travel the world. Diabetes doesn't stop me from starting a business or becoming a doctor, lawyer, or engineer.
Until VERY recently, the FAA prohibited type 1 diabetics from keeping or earning a commercial pilot's license. With the advent of closed-loop insulin pumps and accurate CGMs, that restriction is a thing of the past.
25. We are not really that different from you
You can't tell I have type 1 diabetes just by looking at me.
There's no outside physical difference aside from my "bionic" attachments (insulin pump, continuous glucose monitor sensor).
The well-controlled among us might never give a hint of our lifelong invisible illness, and you'd be none the wiser.
There's nothing wrong with us.
We're normal people.