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I’ve had type 1 diabetes since age two. Diabetes education is near and dear to my heart, especially since I volunteer every year at a day camp for young, and often newly-diagnosed type 1’s.
Let’s dive right in.
1. Type 1 Diabetes is not preventable.
You either get it or you don’t. Changing your lifestyle won’t prevent your pancreas from attacking itself.
2. Type 1 Diabetes is not curable at the moment.
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 closed-loop insulin pumps.
3. I’m “allowed” to have sugar. I just choose not to.
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. Usually, my blood sugars look like this:
4. Your grandma’s best friend’s niece’s college roommate’s aunt’s diabetes is not MY diabetes. 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. 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 diabetes is not “my fault” or “my parents’ fault” or “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. Type 1 can be diagnosed at ANY age.
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 can be genetic, but not always. Mine isn’t (as far as I know).
I’m the first in my family with type 1. My parents are pretty sure it was an environmental trigger, such as my Hep 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 for some reason, possibly genetic, and 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. Yes, Type 1 is “the bad kind.” So is Type 2. All diabetes is “the bad kind” if you don’t treat it properly.
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 for the uninsured are so cost-prohibitive that people have actually rationed their insulin – and died because of it.
For the uninsured, obtaining insulin can be a real (and financial) nightmare.
11. 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 Type 1 closely mimic the symptoms of flu. Get tested.
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. No two days are the same – I can eat, drink, exercise, etc., exactly the same from one day to the next and my blood sugars could be wildly different.
Everything affects blood sugar levels.
- What time I woke up
- What I ate
- When I ate
- How long it’s been since the last time I ate
- Anxiety-triggering events
- Air travel
- Shower temperature
- So many others (see this handy image)
14. Carbohydrates are both my worst enemy and my shining savior. It just depends on where my blood sugar is.
When low (below 85 mg/dL for me), it raises me out of the danger zone
In the normal range (between 85 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 (165 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 my blood sugar go up OR down.
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.
If I were to go to a gym I’d do weights first and then the treadmill.
16. Other medications, such as medications for mental illnesses, can affect blood sugar.
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 directly linked to hunger and weight gain.
I always knew that losing weight as a diabetic was more difficult, but it wasn’t until a couple 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 “are you sure you 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 damn good reason for eating it.
Even better, just don’t ask questions that assume we don’t know what we’re doing.
19. Yes, pricking my finger 3-12 times a day DOES hurt, thanks for asking
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, though, because some are more sensitive than others.
For example, the index and thumb 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. Type 1 Diabetes is an immunodeficiency disorder, which means we are liable to easily get sick and heal slowly.
Thankfully I don’t get sick very often (no kids and not regularly exposed to kids or other sick people) but when I do it takes up to a week to fully recover. Wounds heal more slowly, and I scar easily.
Our immune systems are already compromised, so we do our best to not get sick.
21. Not taking insulin = ketoacidosis = syrup blood = death
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, 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, so my low carb diet will not kill me.
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 f*cking 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. Sensitivities to insulin and carbs vary from diabetic to diabetic.
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 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 5 grams of carb (1 honey stick) can bring me out of a low.
It just depends on the person, and it’s important to remember that.
24. I can do pretty much anything except go into the military or fly commercial airplanes. Type 1 Diabetes does not hold you back unless you let it.
There’s a Tour de France cycling team made up entirely of Type 1 Diabetics.
Truly, this disease doesn’t slow us down unless we let it.
I can’t, for safety reasons, go into the military or fly a plane full of people, 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.
I could get a small plane pilot license, though…
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.