People have kind of this standard model of a disease as something you get treatment for and then you’re better. So we’re getting treatment—insulin—so why aren’t we better? “Oh, you still have that? I thought you were taking something for it” is the assumption. If your medication isn’t working, maybe it’s not the right stuff, or the diagnosis isn’t right, or whatever, but there must be something you can do about it. You can explain why that that model doesn’t fit this disease, and while you’re talking the other person will kinda-sorta get it, but it’s hard for them to set aside the default way of thinking about this sort of thing. And what really throws the monkey wrench in is that, except in the relatively rare case of DKA, if we’re having symptoms it isn’t the disease that’s causing them, it’s the treatment.
In my experience that’s the hardest thing for people to get their heads around, even if they are relatively informed about health matters in general. So you get things like, “If you eat that cake, are you gonna pass out?” from otherwise intelligent people because the assumption is that if you have a disease, it’s the disease that’s the problem, not the stuff you’re taking to make you better. And it’s no help that this confusion is reinforced in countless films and tv shows by our favorite trope, “That Diabetic’s Gonna Need A Shot!”
Maybe a good analogy to use would be that from the day you’re diagnosed and for the rest of your life, you’ve been sentenced to be a tightrope walker, even though you were never trained for it, and you’re never allowed down off the rope. You’re always teetering back and forth, and over time you get better at it, because you have to, and you have tools to help, kinda like how real tightrope walkers have that pole they use to help them keep their balance. But unlike them you never ever ever ever get to take a break, climb down and just walk along the road like anyone else. And no one, not even the best tightrope walker in the world, could stay up there for every single moment of their lives without occasionally losing their balance. It’s just not possible. So even though we work at it really hard, we’re going to wobble or get blown off every once in a while. There’s just no human way to avoid it.