Why is it so hard for the nondiabetic person, even doctors, to understand this disease? Why is it so difficult to explain to people? Why is it so difficult for us to understand it ourselves as people with diabetes?
One of the big reasons is that diabetes is such an individual disease. There are so many factors that weigh into what makes mine as opposed to what makes yours. There are so many different kinds of diabetes. And God knows we must have the correct label, right. It’s a complicated disease with so many moving parts that it defies a concise description. It is surrounded by layers of misconceptions and misguided perceptions. Even in this new millennium there are people still using descriptions of diabetes that date back hundreds of years that are wholly insufficient and inaccurate. Yet they get passed around in this new electronic age as gospel.
Aside from all of this, or maybe because of it, we work to change the conversation. To me the most daunting problem in doing this is the volatile nature of diabetes. Doing the same thing tomorrow that I did today, which was successful today, does not guarantee a second successful day necessarily. I am quite sure that we all have scratched our heads more than once thinking “why are my numbers what they are today? I thought I did everything the same as yesterday.” For no apparent reason things that worked well this morning are not working well for me this afternoon. On so many levels and in so many ways there just are no straight lines.
This is why a person without diabetes has such a hard time understanding. Even healthcare professionals, if they do not have this it is hard to understand what we are talking about. There is no “just do this…” answer. It may work here or there, for this person or that person but it is not an absolute answer. There are very few absolute truths when it comes to managing diabetes or even with the disease itself. That is what makes it so difficult for people to understand. Heck, it’s what makes it so hard for us PWD to understand this thing.
Yes, Type 1 is one of the strangest diseases. One of my roommates said,…“you know when you’re going low, right?
Fred down the street can tell when he’s low.”
“No, I can’t always tell. if I’m low. I’ll test to confirm a low, and I’m at 320 instead. Fred and I don’t have the same kind of D, either.”
I think this is the best analogy: Type 1 is like marriage. You may think you have an idea what it might be like–until you ARE married. Then you realize you had no clue. It’s easier AND harder than you thought it would be. Plus, your experience of it is very unique. Type 1 is both loveless AND a shotgun marriage at the same time, too.
The worst part is, your spouse (Type 1) can be loving and reasonable one day and a psychopath the next. And there is no pattern to it its craziness.
“The definition of insanity is repeating the experiment without changing any of the conditions and expecting a different result.” Unless you’re a diabetic!
My niece had a doctor’s appointment and reported family history, including aunt with Type 1. The doc asked her at what age I was diagnosed and then argued with her that adults don’t get Type 1–only kids do! Eesh! Scary!!
I was dx’d in 1983 at the age of 28, and the terms T1 & T2 weren’t even being used yet, but my Doc didn’t have any trouble identifying what I had as “juvenile” and explained to me that the term was already considered a misnomer, that “auto immune” and “insulin dependent” would be better terms if I needed to explain it to anyone, and it wasn’t that unusual to get it at my age as opposed to when I was still “juvenile.” I mean, this isn’t recent information is it guys? Yet stories like yours still turn up. My doc knew what was up 33 effing years ago! Get with the program Doctors!
A spouse with the charcteristics of diabetes would be worse! He would be needy, clingy, unpredictable, expensive, moody, unable to look after himself, having a twisted desire to be controlled by me just to prove to me that he can do whatever he wants, and generally be a giant millstone around the neck! I take diabetes over that marriage any day!
I have to come clean and admit I’ve never been married. Mostly because I respect the commitment enough not to enter into it lightly. That, and I haven’t found the right woman or a right enough woman. I’m not young enough to still believe I could find the perfect woman (there is no such thing and I’m not perfect), but I might find the woman perfect for ME.
