8 Things Type 1 Diabetics Wish Everyone Else Knew

Diabetes is a concept most people are familiar with. Yet, in my experience, very few people have a firm grip on what diabetes actually is or the realities that diabetics live with every day.

Here are a few simple facts that may surprise you. The statistics vary slightly, but approximately 1.6 million Americans live with type 1 diabetes (T1D), 9 million globally. There was a 21% increase in the diagnosis of people under the age of 20 between 2001 and 2009.[1] And in 2020, the average total medical spend among those with the disease was $12,296 compared to $4233 for those without it.[2]

But these are just numbers anyone can look up if they’re curious. It’s the daily frustrations of diabetes that are more challenging to grasp and hugely misunderstood. It is a disease filled with nuances and subtleties that require detailed knowledge to navigate. For the person living with diabetes, or the parent of a diabetic child, this knowledge becomes second nature, almost innate, though it is hard won. And sometimes we forget that what we consider baseline insights are foreign and unnatural to those who stand outside our ranks. This knowledge gap has fueled many an inside joke or water cooler gossip among diabetics. Though, if I am honest with myself, our scoffing is certainly unfair. How or why should anyone not living with diabetes speak our language or read our maps?

If you are reading this, however, clearly you are seeking to understand, if only a little, what this world is all about. So, in an effort to help, I offer you 8 things type 1 diabetics wish everyone else knew.

1. Type 1 and type 2 diabetes are not the same thing.
This is probably the biggest area of confusion. Even though both conditions involve the role of insulin in the body, they are different, more like doppelgangers than twins. They have surface-level similarities but do not share the same DNA.

Type 1 diabetes is an autoimmune disease in which a person’s immune system attacks and destroys the insulin producing, or islet, cells of the pancreas resulting in the total void of insulin in the body. Type 2 diabetes is a metabolic condition in which the body is unable to effectively use the insulin that the body produces. To be honest, I know very little about T2D and don’t want to venture any explanations of cause or treatment. I’ll leave that to those far more qualified than me.

2. There is nothing anyone can do to stop the onset of T1D, there is no way to reverse it, and there is no cure.
An otherwise intelligent person once told me diabetes could be cured with good quality organic butter. My polite doubt did nothing to quell his insistence. A well-meaning parent once suggested to my cousin, whose son has T1D, that she should try removing all sugar from his diet. My cousin smiled and thanked the woman for her concern.

I recognize no one intends to be insensitive, and most people are sincerely trying to be supportive, but those of us on the inside chuckle when we hear these sorts of things. The hard facts are that not much is known about the cause of diabetes. While there are now ways to identify the markers and, perhaps delay onset, there is no way of preventing onset once it has begun. And a cure is not likely to surface in my lifetime.

3. Diabetics experience both high blood sugar (hyperglycemia) and low blood sugar (hypoglycemia).
Our bodies are amazing and intricate creations. For a non-diabetic, the regulation of blood sugar is an incredibly complex and continuous process that involves the pancreas, the liver, and the perfect balance of four hormones. The body is responding in real time to the intake of food, exercise, infection, sleep, and so many other things that impact blood sugar up and down.

For a diabetic, insulin is introduced mechanically based on algorithms and, often, guesswork. While modern insulin pumps are the most precise replication of natural body function we have ever known, they are far from perfect. So, if those algorithms or guesses do not hit the mark blood sugar can skyrocket or plunge. When that happens more algorithms and guesswork are used to correct the high or low blood sugar. Clearly, this is not perfect science, and there are days when diabetics live on a rollercoaster of highs and lows that can be difficult to stop. These are not fun days.

4. Diabetics do not have to eat on a schedule, and can, for the most part, eat whatever they want.
For decades, diabetes was controlled by strict schedules and highly restricted diets in an attempt to match the way in which the improvised insulin worked. When I became insulin dependent in 1976, I was treated with one daily injection of swine insulin, and my eating and exercise schedule had to be carefully plotted.

Today, the treatment methods are light years ahead of my earliest days with the disease. Modern insulin pumps and continuous glucose monitors have afforded diabetics a level of freedom that I could never have dreamed of as a child. With these miracles of technology diabetics can eat almost anything they want whenever they want it. Or we can choose to eat nothing at all (unless dealing with low blood sugar), which, in my mind, may be an even greater gift.

5. Modern food fads are not an option for a diabetic.
Keto, Paleo, Atkins, Whole30, South Beach, Grapefruit, Macrobiotic, Mediterranean. There is a never-ending list of fad diets along with their advocates and proselytizers. I’ve never been a big believer, but that could be because most are not an option for someone with diabetes. Though many people feel free to suggest them as a way of including “food mindfulness to help control your diabetes.”

Yes, with modern treatments, diabetics have an amazing freedom of choice when it comes to food…most of the time. But the truth is, I could throw myself headlong into Keto but only until my blood sugar drops and I have to eat a packet of fruit snacks or collapse. And I could choose to nibble on dried mangos to stave off hunger, but they will inevitably drive my blood sugar so high I will be chasing it with insulin for hours. It just doesn’t work.

To me, being “mindful” of my food is primarily related to how it will impact my blood sugar. For most diabetics, a balanced diet that consists of every food group is the best choice. So please don’t be offended if your diet suggestions go unheeded.

6. Fatigue, mental, emotional, and physical, are a diabetic’s regular bedfellow.
Diabetes is not a disease for which you can simply take your medication in the morning and not think about it again until your next dose is due. I think this is one of the most difficult aspects of diabetes to comprehend by anyone without the disease.

My blood sugar is the first thing I check in the morning before I get out of bed. It’s also the last thing I check before I close my eyes at night. Often I must deal with low blood sugar during the night, sometimes more than once. Every time I eat, I must calculate the number of carbohydrates and enter it into my pump. I need to think about my activity level from the day before or in the hours ahead and take that into consideration. If I am leaving the house, I must have some sort of sugar with me in case of low blood sugar. Am I sick? Am I stressed? How much life is left in my pump charge or my CGM sensor? And so many other things.

All this to say, there is rarely 30 minutes in any day when I do not have to think about my diabetes in one way or another. It takes a toll mentally and emotionally on top of the physical drain due to constantly fluctuating blood sugar. I fight fatigue in all its forms constantly. And so do many people living with diabetes. It’s just the way it is.

7. Support, both emotional and physical, are essential.
When I was diagnosed as a little girl, my parents were told I should not have children. It was too risky. At the time, I was 10 and didn’t care. But when I wanted to get married, it became a big issue for me. That and everything else it meant for my future husband. In fact, when he first told me he wanted to marry me I told him he didn’t know what he was getting himself into and I nearly ended our relationship. The next day, there were a dozen roses waiting for me at work and a note that said, “I’m in this with you all the way.”

I’m a fortunate woman. He has been in it with me up to his eyeballs for more than 30 years. Thankfully, both my daughter and my niece are equally fortunate with the men who are in it with them. Having children is no longer the risk it once was, but diabetes is not something you live with alone. It impacts everyone around you. My daughter’s fiancé and my niece’s husband are amazing men. Because of their love, kind words, vigilance, and commitment, I know these women whom I love are not alone in this. And they are safe.

8. Diabetics can live long and thrive.
In the 1970s, when I was diagnosed, diabetes was often viewed as something that would cut life short and limit the living of it. My parents simply wouldn’t have it. They never told me I couldn’t do something because of my diabetes. The only thing they said was, “We will figure it out.” I was never restricted and was never allowed to think of myself as a victim. There are few things in my life I am more grateful for.

Because of them I did a lot. I had some success as an athlete. I traveled extensively as a teenager without my parents. I bicycled around the perimeter of the United States when I was in college. I moved to Japan on my own as soon as I graduated. All this before insulin pumps, continuous glucose monitors, and cell phones. It required careful planning and was not always easy, but what in life is?

I’ve been living with diabetes for nearly 50 years now, and I’m not slowing down anytime soon. To be perfectly honest, I think diabetes itself has given me some of the characteristics, outlooks, and strengths that have made my life so full. So when it comes right down to it, in some ways diabetes may have made my life better.

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[1] https://beyondtype1.org/type-1-diabetes-statistics/#:~:text=There%20was%20a%2021%20percent,under%20the%20age%20of%2020.

[2] https://healthcostinstitute.org/diabetes-and-insulin/privately-insured-individuals-with-diabetes-have-double-the-out-of-pocket-spending-on-health-care-than-those-without-diabetes#:~:text=In%202020%2C%20average%20total%20spending,%244%2C233%20among%20individuals%20without%20diabetes.