A couple of weeks ago, I came across a TikTok from a nurse talking about administering insulin to a patient in the hospital. She was explaining the dose, the precautions surrounding it, and the safeguards that can be required when giving insulin in a hospital environment. I don’t remember what made me stop on that video in the first place, but watching it from the perspective of someone with Type 1 diabetes… someone who gives himself insulin every single day just to stay alive… it made me look at something I’ve done everyday for years completely differently.
On an average day, my body receives somewhere around 40 units of insulin. Some days it’s more, some days it’s less. Because I wear an insulin pump, I’m receiving small amounts of insulin continuously throughout the day, along with larger doses when I eat or need to correct a high blood sugar. I calculate it, approve it, and go on with whatever I was doing. I’ve done it for so long that most of the time I don’t even consciously think about how significant what I’m doing actually is.
But watching that nurse made me stop and think about it.
For those who may not know, insulin is considered a high-alert medication in healthcare. It is the kind of medication hospitals build safeguards around because an error in dosing can cause serious harm and, in some circumstances, death. Depending on the hospital, situation, and type of insulin administration, there can be protocols requiring another trained healthcare professional to independently verify the insulin before it is even given. Insulin can warrant that level of caution when administered by trained medical professionals because relatively small dosing errors can have catastrophic consequences.
And yet, when I was 12 years old, I had to learn how to administer it to myself…
I think that’s something worth stopping and considering.
At 12, I had to learn how to calculate how much insulin I needed based on how many carbs I was eating, what my blood sugar was, where it was headed, how much insulin was already active in my body, and what I was going to be doing afterward. I had to understand that too little insulin could make me incredibly sick and eventually become life-threatening, while too much could drop my blood sugar low enough to cause a seizure, unconsciousness, coma, or death.
And the scale we’re talking about is TINY. (Like smaller than a grain of rice TINY.) Insulin is measured in units, with pumps today capable of delivering fractions of a single unit. We’re talking about differences that can be physically minuscule, yet can have very real effects inside the body. There isn’t one universal amount where “this much insulin will kill someone”… every person’s needs and circumstances are different… but that’s almost what makes the responsibility more eye opening and scary. The right amount for one person, or even the right amount for me at one moment, isn’t automatically the right amount at another.
Then I think about the kids who learn this even younger than I did.
I think about the parents who leave the hospital after their child’s diagnosis carrying insulin, needles, glucose meters, emergency glucagon, books of instructions, and the realization that they are now responsible for manually doing something their child’s pancreas was supposed to do automatically. That carries its own enormous weight. Parents make those calculations at dinner tables, in school parking lots, at 2:00 in the morning, during illnesses, before sports, on vacations, and everywhere in between.
And then, eventually, many of those kids begin taking some of that responsibility into their own hands.
A kid learns how many units they need for lunch. They learn insulin-to-carb ratios and correction factors. They learn how to look at a number and an arrow on a CGM and understand that 100 isn’t always just 100. They learn that the exact same meal, the exact same dose, and the exact same starting blood sugar can somehow give them a completely different result than it did yesterday.
They learn how to make decisions about a medication powerful enough to be treated as high-alert in a hospital.
And then they put everything back in their school bag and go to class like nothing has changed or happened…
That’s the part that really stuck with me after watching that video. Because when you’ve lived with Type 1 long enough, this stops sounding dramatic. It’s just another normal Tuesday.
I think that’s also why Type 1 can be so difficult to fully understand from the outside. Most people see the visible pieces. You see my Dexcom on my arm. You see my Omnipod. You might hear an alarm or see me glance at my phone. Maybe you see me grab something to eat when I’m low or give myself insulin before dinner.
But you’re seeing the equipment. You’re not necessarily seeing the responsibility attached to it.
Because the insulin doesn’t just require physical management… It requires mental management, too.
Every bolus is a decision. Every correction is a calculation. Every meal requires another judgment call. Exercise changes things. Stress changes things. Illness changes things. Sleep changes things. Hormones change things. Sometimes seemingly nothing changes, and diabetes decides to behave differently anyway. You can make what appears to be the exact same decision you made yesterday and somehow get a completely different result today.
And when something doesn’t work, you fix it. You treat the low. You correct the high. You change the site that failed. You silence the alarm. You grab the juice. You wait. You watch the arrow. You calculate again. And then bam, it’s just another Tuesday.
Most of the time, none of that looks dramatic from the outside.
But knowing how to handle something doesn’t make carrying the responsibility for it weightless.
And I think that’s something worth remembering, too… people with Type 1 are doing a good job on the good days, but they’re doing an incredible job on the bad ones. On the days where the numbers cooperate, there are still calculations, decisions, insulin, alarms, and constant management happening in the background. But on the days where nothing seems to work, where you’re correcting the same high over and over, treating lows that won’t stay up, changing a failed site, second-guessing doses, watching arrows, recalculating, and trying to figure out what your body needs from you next… you’re carrying all of that responsibility while also dealing with the physical and mental exhaustion of diabetes refusing to cooperate. Sometimes the days that look the least “successful” on a graph are actually the days someone with Type 1 worked the hardest.
But after enough years, something strange happens: it becomes normal. Ask me… or probably almost anyone who has lived with Type 1 long enough… and most of us aren’t looking for pity. I don’t wake up every morning thinking about how unfortunate it is that I have diabetes. This is simply my life. I’ve lived this way for so long that, sadly, I don’t really remember what it felt like to live without it.
But sometimes I think even we confuse being used to something with it being easy.
Of course we get used to it. What other option do we have?
I can’t decide I’m too overwhelmed to take insulin this week. I can’t take a few days off from diabetes because I’m tired of thinking about it. I can’t decide that the alarms are becoming inconvenient, the calculations are annoying me, or I just don’t feel like dealing with my blood sugar today.
When something is required for you to stay alive, eventually you stop viewing it as optional enough to even call it an inconvenience.
You just do it.
Again and again and again.
And eventually, you can become so good at carrying that responsibility that everyone around you… and sometimes even you… can forget how heavy or existential it actually is.
That’s where the mental side of Type 1 can become exhausting. It doesn’t always look like some massive breakdown. Sometimes it’s the accumulation of hundreds of tiny decisions that never stop needing to be made. It’s doing everything “right” and still watching your blood sugar do something you didn’t expect. It’s wondering whether you gave too much insulin and watching the arrow afterward. It’s correcting a stubborn high for the third time. It’s getting woken up by an alarm at 3:00 a.m., treating whatever is happening, going back to sleep, and being expected to function the next morning like you slept through the night.
It’s knowing that small mistakes can sometimes have very real consequences while also knowing that you’re a human being who is inevitably going to make those said mistakes.
And there is a particular part of that experience that I don’t think anyone can completely understand unless they live inside a body with Type 1 themselves. That isn’t meant to diminish the incredible mental load carried by parents, spouses, caregivers, friends, or anyone who loves someone with T1D. They carry pieces of this disease with us, and parents especially can carry an unimaginable amount of responsibility for their children. But there is something uniquely difficult to describe about being the person inside the body you’re constantly making these decisions for… actually feeling the high, feeling the low, making the calculation, giving the insulin, and knowing that when everyone else goes home, you still live here.
So maybe this is just a friendly reminder during Diabetes Awareness Month: if you know or love someone with Type 1, give them a little grace.
If we’re frustrated, please don’t immediately ask if our blood sugar is high. If we’re irritated, don’t automatically assume we’re low. And if you ask us to check and our CGM says 110 with a perfectly straight arrow, that doesn’t suddenly invalidate whatever we’re feeling.
Sometimes diabetes has something to do with our mood. Sometimes it doesn’t. Sometimes we’re simply human beings who are allowed to be frustrated, exhausted, angry, overwhelmed, or have a bad day without a glucose number being responsible for it.
And sometimes the number really is perfectly fine… but you didn’t see everything it took to get it there.
That 110 doesn’t show you the insulin calculated hours ago. It doesn’t show you the low that was caught before anyone noticed. It doesn’t show you the site that failed earlier, the alarm in the middle of the night, the restaurant meal whose carbs were basically an educated guess, the correction we’re waiting on, the fear that we gave too much, the frustration that we didn’t give enough, or the dozens of other diabetes decisions already made that day.
I don’t say any of this because I want anyone to feel sorry for me. Trust me, I don’t. Like I said, it’s become my normal. If anything, Type 1 has been part of my life for so long that most days I barely recognize many of these things as unusual anymore.
But that’s exactly why that random video stopped me.
For a few minutes, I got to look at something I do every single day from the perspective of someone who doesn’t have to do it. I thought about the safeguards surrounding insulin in a hospital. I thought about the nurses trained to administer it. I thought about how seriously the medical field treats this tiny amount of liquid.
And then I thought about 12-year-old me learning how to do it himself.
There are children learning it even younger.
There are parents doing it for babies who cannot tell them how they’re feeling yet.
There are teenagers trying to manage it while going to school, playing sports, taking exams, going out with friends, and just trying to be teenagers.
There are adults who have been doing it for decades and have become so practiced at carrying it that you may never realize they’re carrying anything at all.
So when you see the Dexcom, the Omnipod, the insulin pen, the pump clipped to someone’s clothes, or the person looking down at their phone to check a number, remember that you’re seeing the smallest, most visible piece of Type 1 diabetes.
Behind it is an entire invisible responsibility.
We don’t need you to pity us. But every once in a while, it means something for the world to understand just how much we all “carry”.
See the device… but see the person wearing it.
See the number… but see everything it took to get there.
See the insulin… but see the responsibility that comes with it.
SEE T1D.
#SeeT1D #DiabetesAwarenessMonth #Type1Diabetes #T1D #BreakthroughT1D
