Living with Type 1 Diabetes: FAQs

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November is Diabetes Awareness Month! And today, November 14th is World Diabetes Day. As a person with diabetes (PWD) myself, it really truly means the world to me that you are reading this post. Thank you!! :)

There are almost 30 million people in the US alone (that’s nearly 10% of the population!) who suffer from diabetes, and yet I’ve found relatively few people really understand the disease. So today, I’d like to interrupt your regularly scheduled crafty post and take a moment to share a an honest (and hopefully not-too-blunt) look at my life with diabetes.

Type 1 diabetes is a chronic illness that is highly stigmatized and misunderstood. Here I answer frequently asked questions about living with it. | Type 1 Diabetes | T1D | T1DLooksLikeMe | JDRF | Mom Makes Joy

In the six, almost seven, years that I’ve had this disease, I was sad to find that diabetes is a disease that some people will judge you for having. These people think you’re being impolite–or worse, “gross”–by checking your blood sugar in public. They assume having this disease is your fault, something you get for “eating too much sugar” or overeating generally. Complete strangers will mother you by making judgment calls on whether or not you should be eating something, and for some reason people love to tell you how simple the disease is to “cure” (as if there’s this “cure” out there the doctors forgot to mention! Ha!)

On a good day, it can be a challenge to deal with. On a bad day…

So today I hope to answer some frequently asked questions about diabetes and maybe shed some light on what it’s like having diabetes. Since I have type 1 diabetes, most of my answers will be given from this perspective. Shall we get started?

What is diabetes, exactly?

I answered this question in my diagnosis story, but I’ll copy/paste it here:

Imagine a cell in your body is like a house. Every house has a door, and every door has a lock and key. When you eat any food with carbohydrates in it (i.e. not just sugar), those carbs are broken down into a type of sugar called glucose. Once broken down, glucose passes through your blood stream into your cells, giving your body energy, helping you survive. When you’re a diabetic, your cell’s “door” (in keeping with the house metaphor) is locked, so your blood glucose (or “blood sugar”) can’t enter the cell and instead stays built up in the blood stream. Left untreated, too much sugar in the blood stream can cause retinopathy, blindness, neuropathy, kidney disease or failure, heart disease, stroke, coma, and death. The key to unlock the door of your cell “house” is called insulin, which is produced by the pancreas. Diabetes is a disease in which this key, insulin, is either not produced or cannot be used by the body.

Living with Type 1 Diabetes: FAQs | www.EssentiallyEclectic.com

Do you have the bad kind of diabetes?

No. Because there is no “good” kind of diabetes! I have the kind of diabetes (type 1 diabetes) that requires the injection of insulin via a syringe or an insulin pump. This is required because in type 1 diabetics, the pancreas no longer produces insulin due to an autoimmune attack on the body. Most type 1 diabetics are children, but type 1 diabetes can affect you later in life (I was 18, my aunt was 20).

Type 2 diabetes, on the other hand, is the kind of diabetes you most often hear about on television and affects 9 out of 10 diabetics (only 5-10% of diabetics have the type of diabetes I have). It most often does not require the injection of insulin, since a vast majority of type 2 diabetics still produce at least some insulin but cannot utilize it due to the fact that their bodies have become “insulin resistant.” Type 2 diabetes can be managed with oral medications (injected insulin is only sometimes required), diet and exercise. Being overweight can cause insulin resistance, and sometimes advanced age will cause this as well.

The takeaway: The onset of type 1 diabetes has nothing–zero, zilch, nada–to do with lifestyle, food choices, or habits. Furthermore, type 2 diabetes is just as much about genetics as lifestyle–there are plenty of overweight/obese people in the world who do not have type 2 diabetes. Very often diabetes is seen as a disease that is “your fault.” But in many many cases–and in the case of EVERY type 1 diabetic–this notion is ABSOLUTELY FALSE!

Also, please don’t ask people with diabetes (PWDs) if they have “the bad kind,” since that’s a great way to make someone feel bad. If you’re curious, the best way to ask is “Do you have type 1 or type 2 diabetes?” I promise the PWD in your life–especially if they are a type 1–will love you for asking an informed question!

So, does this mean you can’t eat sugar?

No! In fact, there are times when diabetics HAVE to eat sugar or they will die–as in, very quickly. Sugar does not–I repeat, DOES NOT–cause diabetes, especially type 1 diabetes! Sugar only relates to type 2 diabetes insofar as diets high in sugar often lead to weight gain, and excessive weight can (but does not always) cause the insulin resistance that defines type 2 diabetes.

The takeaway: Sugar is not always bad for a diabetic; sometimes it’s literally necessary to sustain life!

Is that a pager on your hip?

No. It’s an insulin pump! An insulin pump is a small device that delivers insulin without requiring a shot every single time. Insulin pumps (and insulin injections generally) are primarily used by type 1 diabetics. To deliver insulin with a pump, a small shot is required to get a tiny tube called a “cannula” to sit underneath the skin. The needle from this shot is then removed, leaving the cannula in place. The cannula is attached to tubing that is kept in place with adhesive, and that tubing connects to the insulin pump. The insulin pump is then filled with insulin and can deliver insulin through the tubing in very fine-tuned amounts. To ensure that the skin retains its ability to absorb insulin, the cannula is moved around to different parts of the body (abdomen, love handles, back of arms, outer thighs) once every three days.

Living with Type 1 Diabetes: FAQs | www.EssentiallyEclectic.com
This is an infusion set, a plastic device used to hook up the pump to your body. The cannula is a small tube wrapped around the small needle in the middle of the set (to give an idea of its size–it’s pretty tiny). Here you can also see the pump tubing, which is a great deal larger than the cannula.

Some PWDs love their insulin pump, and some prefer using multiple daily injections with a syringe. For me, the syringe hurts too much. I love that with a pump, I only have to endure a shot once every three days. I also like that I can give myself very fine-tuned amounts of insulin, and that once I program my pump with the right settings, it does the math for me so I don’t need figure out how much insulin to give myself.

I’ll admit, it was weird wearing the pump at first. You have to clip it to your body or stick it in a pocket, and if you’re not careful the tubing can get caught on things. At first, the pump felt like a ball and chain, but after a while I found I forgot it was there. Once I even went to work thinking it was clipped to me when it wasn’t–that’s how normal it feels to have it on! Fortunately, the way the tubing and cannula are set up, you can disconnect yourself from the pump to shower or swim or, say, wear a wedding dress for a few hours.

Living with Type 1 Diabetes: FAQs | www.EssentiallyEclectic.com
Photo Source — This is what a typical insulin pump looks like when it’s connected. You can disconnect from the pump near the adhesive portion of the tubing. Also, this is not my stomach :)

The takeaway: The insulin pump is for many a wonderful alternative to multiple daily injections, but it’s not a cure and it’s not a pancreas attached to my hip. Your pancreas works automatically and perfectly every time. A pump does not. You have to tell your pump how much insulin you think you need, and you have to tell it this every time you need insulin. The pump only works as well as you do.

Should you be eating that?

Maybe. Maybe not. But the point is, that’s for me to decide. With an insulin pump, I can easily give myself insulin to cover the food I eat, meaning technically I can eat like a non-diabetic if I wanted!

I try not to do that though, because it is difficult to wrangle your blood sugar into normal levels with certain foods. Take pizza for example. If I were to eat a slice, I would need to carefully manage 3-5 widely ranging variables that will affect the way the insulin works with the food I’m eating. If I don’t give myself insulin far enough in advance, if I don’t estimate the number of carbs in the pizza correctly, or if I don’t deliver insulin over a long enough period of time, for example, my blood sugar will skyrocket. There are just too many variables for foods like this, so often it is better to avoid them. They’re not good for you anyway!

Fortunately, most foods aren’t as terrible for your blood sugar as pizza often is for mine; I can eat a reasonable sized slice of cake or a couple cookies no problem. It’s just a matter of taking insulin for it.

The takeaway: Please for the love of all that is good never ask a PWD if he or she “should really be eating that” unless you’re his or her parent or spouse. We manage diabetes 24/7/365. We got this :)

Did you used to be overweight?

No. I was 5′ 1″ and 105 pounds when I was diagnosed with diabetes.

The takeaway: Type 1 diabetes has nothing to do with weight.

What is a CGM?

CGM stands for continuous glucose monitor. It is a small sensor inserted under the skin that continuously checks your blood sugar about once every 5 minutes, 24 hours a day. The sensor “talks” to a small handheld device that displays your results, giving you a graph of your blood sugar moving up and down in almost-real-time (it lags about 15-20 minutes behind your real blood sugar levels). Not all PWDs use a CGM, but I’ve found that most who do love it. Unfortunately, a CGM is not a replacement for regular finger poke blood sugar tests–you still have to do them before and after meals per usual.

Living with Type 1 Diabetes: FAQs | www.EssentiallyEclectic.com
This was a good day for my blood sugar! However, it is NOT easy to get numbers like these. Sometimes it even feels like a matter of luck!

The CGM is not perfect, but it can be pretty accurate and it does a nice job showing you trends–is my blood sugar generally staying level? Going up fast? Going down slowly? The CGM can be set to beep obnoxiously if you go too high or low, making it a sometimes life-saving device.

FAQs About Life with Diabetes: The Highs & Lows | www.EssentiallyEclectic.com
CGM on bottom and glucose meter on top–pretty accurate, yeah? Excuse the crappy phone photo.

The takeaway: The CGM is a great tool for blood sugar management, but like the insulin pump it is not a cure and it is not perfect. Sensors can fail or be too far off from your real sugar levels, so finger poke checks are still a mandatory part of diabetes care, even with a CGM.

What does a low blood sugar feel like?

Imagine you’ve never run more than a mile before, but you get up and run a 10K without training beforehand. You’re sweaty, your heart is racing, your muscles are sore, your legs feel like jello and you’re shaking. Add to this that all of a sudden, all you can think about is sugar, but even that is getting hard to do as your brain becomes foggy and you can’t really think straight.

That’s what my low blood sugars feel like. But there are more symptoms: Some people also feel like their face, chin, tongue, or other parts of their body go numb. Mood swings often happen too: Some people get irrationally angry when they’re low, or possibly act like they’re drunk.

Sometimes completely healthy folks will have a low blood sugar (I had them a few times before I was diagnosed), but a diabetic low blood sugar–which usually happens because you overestimated your insulin needs–is SO much worse.

The takeaway: A low blood sugar sucks. If your diabetic friends stars slurring or acting weird, something might be very wrong, so get them help!

How do you deal with all the shots?

I get this question a lot, actually, and the answer is easy: If I don’t deal with the shots, I will die–and faster than you might think. Before the use of insulin to treat type 1 diabetes, many type 1s would die within a few months of diagnosis.

The takeaway: Shots don’t sound so bad now, huh? ;)

What is the hardest part about having diabetes?

I tried to pick just one, but there are two things that are equally difficult for me. First, the unending nature of it. I am constantly thinking about my blood sugar and I have to be on top of things 24/7/365 (366 on leap years) for potentially the rest of my life. There are no vacations. I don’t get time off–sometimes not even when I’m sleeping (I often wake up a couple times a night to check on my blood sugar). There is currently no cure for diabetes, and while people love to throw around the word–and even despite the most recent advances towards a cure–a real cure won’t be available for years (a “cure” has been “just around the corner” for decades–ask my grandma if you don’t believe me!).

Second, there is no such thing as perfect diabetes management. I am not a pancreas, so no matter how hard I try, no matter how much effort I put in or how well I eat and exercise, there will be good days and bad days for my blood sugar. I can eat the same type and amount of food at the same time of day and take the same amount of insulin and get totally different blood sugar results from one day to the next. So many things can affect your blood sugar (this author compiled an incomplete list of 22 different variables!) that perfection is impossible, and that fact is something I’m still having difficulty accepting.

Living with Type 1 Diabetes: FAQs | www.EssentiallyEclectic.com
Another fun diabetic accessory! This is a needle used to insert a CGM sensor into the skin. Yes, it hurts.

The takeaway: Diabetes sucks.

Was there anything about diabetes you weren’t expecting?

The emotional/psychological aspect. For the first 5 years after diagnosis, my diabetes felt relatively easy to manage.  I was still living at home. My mom paid for my diabetes supplies, went with me to doctor appointments, and cooked dinner for me at night (Thanks Mom!). Plus, I was distracted with my senior year of high school, a boyfriend, college, and eventually planning my wedding.

Moving away from home after I got married made things a bit more difficult–I was financially responsible for this money-eating beast that is diabetes. I started to intensely crave less healthy foods as the pressure to eat a certain way started weighing heavily on me. And as my blood sugar control started to slip away, I grew increasingly anxious. What happens if one day I can’t afford to pay for insulin or test strips or pump supplies or CGM sensors? What if something happens to my insurance coverage? What happens if even despite my attempts to be healthy I develop diabetes complications, like eye disease or heart disease or nerve pain or any number of other terrible things? And despite this anxiety, I could barely muster up the willpower to work harder at managing my diabetes because I had finally become completely drained.

Add to all this that I fell into a vicious cycle of self-judgment and defeat. Every time my blood sugar meter read a number that was too high or too low, I felt like I failed. “I screwed up again,” “Why do I even bother?”, “What did I do wrong this time?”, “I can’t do this”  — it started to feel like I was having these thoughts with every glucose check (and I check my blood sugar 10-15 times a day!).

I became afraid of slipping into full-on depression, so I started seeing a psychologist at the Joslin Diabetes Center in Boston who specializes in working with PWDs struggling with these kinds of issues. And I learned that everything I was feeling was not unusual–it was normal, even!

Can you believe that? Normal!

It’s going to be a long journey, but many PWDs have been able to overcome the psychological side of diabetes.  Like with everything (especially your blood sugar), there are good days and bad days, but the good days are starting to become more and more frequent, and for that I am very thankful.

The takeaway: Nobody really told me about the emotional side of diabetes: feeling anxious, depressed, burned out, drained, exhausted. It’s real, and its something that needs to be managed just as much as your blood sugar.

Thanks for stopping by the blog today! Do you have questions about diabetes that I didn’t answer here? Pop them in a comment and I would be happy to answer them! Only kind comments, please :) 

Diabetes  Resources I Found Helpful:

Balancing Diabetes: Conversations About Finding Happiness and Living Well

Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin

Dealing with Diabetes Burnout: How to Recharge and Get Back on Track When You Feel  Frustrated and Overwhelmed Living with Diabetes

Love,
Gabby

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Type 1 diabetes is a chronic illness that is highly stigmatized and misunderstood. Here I answer frequently asked questions about living with it.