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If you’ve never lived with type 1 diabetes (T1D), you might wonder what all the fuss is about. With fancy insulin pumps and continuous glucose monitors that talk to your smartphone, this disease must be manageable by now — right?
In reality — despite the many advancements in technology and insulin — managing T1D is still an hour-by-hour non-stop effort to both stay alive and live a full life. Keeping yourself alive for decades with any type of diabetes is a daily accomplishment but managing it while also living a full life is truly complicated, endlessly challenging, and never simple.
Insulin is a treatment — not a cure.
The human body requires a constant drip, drip, drip of insulin throughout every single day and night. When you eat a meal, your pancreas as a non-diabetic simply knows it should produce a larger drip of insulin.
But there’s even more to it — dozens of factors affect blood sugar levels and insulin production.
In a person with T1D, every single increase or decrease in that drip of insulin must be managed through settings on an insulin pump or through injections/inhalations using manufactured insulin, which is inevitably inferior to the stuff a non-diabetic’s pancreas naturally produces.
Without enough insulin, the glucose in your bloodstream cannot get to the cells in your body which depend on it for fuel. When too much glucose builds up in your bloodstream, it damages the nerves and blood vessels throughout your fingers, toes, eyes, kidneys — basically every organ in your body.
Without enough insulin, your blood sugar levels will continue to rise to life-threatening levels that can and do kill.
But wait — it gets a little crazier.
People with T1D also don’t produce a critical hormone called amylin! Amylin is also produced by the pancreas, and it works in tandem with insulin — especially after you eat.
Amylin prevents your blood sugar from spiking while digesting meals, tells your brain that you are full, and tells your liver when it should stop releasing stored glucose! (Yes, your liver has stores of glucose that it drips, drips, drips throughout the day!)
People with T1D are trying to compensate for two missing hormones — both critical to your body’s hour-by-hour ability to function.
The littlest things can affect your blood sugar — and put you in danger.
Developing a bit of anxiety in life with T1D is practically a guarantee. There’s not a single hour in the day when we are truly safe. Even if we can get our hands on the best diabetes technology, it is still a 24-7, hour-by-hour, non-stop effort to stay alive. The line between “safe” and “in danger” is very thin.
You might think that sounds dramatic, but here are just a few examples:
Going for a dog walk: If a person with T1D just took a dose of insulin at noon for lunch but wants to walk their dog at 1 p.m., they are at risk of severe hypoglycemia (low blood sugar) because most mealtime insulin stays in your system for about 3 to 5 hours after dosing.
Exercise (even vacuuming the house) increases how quickly insulin picks up glucose in your bloodstream. This means every bout of exercise must be meticulously planned around how much insulin is active in your bloodstream — otherwise, you end up scarfing glucose tabs, juice, or candy just to survive the dog walk.
Sleeping through the night: You know what never stops moving? Your blood sugar. You know what never sleeps? T1D. When a person with T1D closes their eyes at night, they are at risk. At risk of mild-to-severe low blood sugar and high blood sugar.
The impact of insulin, food, and physical activity in the many hours before bed can easily impact your blood sugar while you are sound asleep. Trying to let go of that worry and responsibility for eight hours of “good” sleep isn’t easily possible with this disease.
Some people feel the only safe way to sleep through the night is to intentionally run higher blood sugar levels. Others aim for tighter targets but wake up frequently with lows thanks to loud alarms from CGMs or the usual sweaty, shaky, panic-stricken symptoms. And sometimes, people sleep right through the low until they’re experiencing a seizure, facing the risk of death.
Managing normal hormonal changes: There are so many things that affect blood sugar levels and insulin sensitivity that a person cannot control. A big one is hormones. The fluctuating hormones involved in puberty, menstrual cycles, pregnancy, menopause, and hypogonadism will throw your usual diabetes management routine out the window.
These aspects of life require constantly reacting and adjusting insulin doses to stay in your target blood range. For example: The day you ovulate versus the day your period starts can require two significantly different insulin routines. The amount of insulin you need as a teenager can be double the amount you might need as a full-grown adult.
Trying to time insulin dosing with meal digestion: Determining the insulin dose for any meal is a wild game of combining facts with guesses about quantity and time. While most people think insulin is required for carbohydrates — and specifically sugar — you also need insulin to manage the digestion of protein and fats.
Trying to time your insulin dose with the digestion of your meal is truly complicated — and most mealtime insulin can take almost an hour to start working after dosing. For example: Meals high in fat can take hours to digest, but if they also contain carbohydrates, you might need some insulin at the time of eating and some insulin several hours later. There is no easy roadmap for how much or when to take insulin because every person’s insulin needs are different, and every meal contains different amounts of fat, carbs, and protein.
Managing T1D in a child: This disease can be diagnosed at any age between newborn to 100 years old, but the challenges a child and their parents face are hard to believe.
Imagine trying to predict how many grams of carbohydrate your 4-year-old is actually going to eat at dinner? Imagine asking a 3-year-old to pause on the playground and consider if they’re feeling the early symptoms of hypoglycemia? Imagine tucking your 5-year-old into bed at night and feeling like you need to keep one ear and eye open all night long in case their blood sugar starts dropping?
Managing T1D as a teenager: At the age when all you want is to fit in, T1D will do everything it can to ensure you stand out.
In addition to the very visible diabetes gadgets attached to your body, the non-stop responsibilities of T1D aren’t fair to ask of a teenager whose relationship with any type of responsibility is still developing and growing.
As if being a teenager isn’t hard enough, imagine asking that teenager to be responsible for the hour-by-hour management of a hormone that their body is supposed to manage on its own? Imagine asking them to carry that hour-by-hour responsibility when they head to college, too.
Being constantly graded — pass or fail: Every blood sugar level basically feels like a grade or a “pass” or “fail” depending on the number. There is no such thing as total perfection in T1D.
High blood sugar levels will happen even if you’re doing everything you can to stay in range. But the emotional weight of those hour-by-hour grades can be severely overwhelming.
Many people with T1D struggle with constant feelings of failure, guilt, and shame because this disease never slows down, the hormone-management learning process is endless, and so much of it is completely beyond their control. Learning to build the resilience that helps a person with T1D get through every day takes time and so much support.
Well, this list could go on and on.
It could be easy to assume, “Well, so-and-so competed in the Olympics with type 1 diabetes—it can’t be that big a deal!”
Yes, people with T1D have accomplished awesome things despite the life-threatening challenges of this disease — but we still need cures, better treatments, and more accessibility to the tools that make T1D manageable.
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