Here I go. But first, to all my brothers and sisters struggling with and managing Type 2 diabetes, my hat is off to all of you. As you endure the daily grind of judgment, fluctuating blood glucose levels, pain, diet, exercise, and scrutiny from society and loved ones, we, as Type 1s, empathize with you, but as you know, we are not you. Since you are strong in numbers, and we are not, (about 5 percent of the diabetes population), we ask that you stand with us and help us spread the word about the difference between your plight and ours. Remember that we are not trying to differentiate from you because we don’t understand what you go through on a daily basis, we just need a different set of diabetes social awareness and education.
That being said…
It was 1994 — I was a newly-hired diabetes sales representative, and I had an interesting conversation with a clinic doctor who was a month away from retirement at that time. Our conversation went something like this:
Well-Meaning Doctor: “You know, Peg. If you loose 10 pounds, you could go off insulin.”
Peg: “No. I have Type 1 diabetes.”
Well-Meaning-But-Now-Defensive Doctor: “That doesn’t matter. All you need to do is lose some weight and then you wouldn’t be on insulin.”
Peg: “No, Doc. I have Type 1 diabetes, not Type 2. It doesn’t matter how much I weigh, or what I eat, my kind of diabetes is always insulin-dependent, and I need it to stay alive.”
Appallingly-Uninformed-Doctor-Who-In-My-Personal-Opinion-Needed-To-Go-Back-To-Medical-School interrupts here: “You’re wrong! Just lose some weight and you can go off insulin! You’re fat!”
At this point, he is literally leaning across his desk with both hands gripping the wooden top, glaring at me. I could hear water dripping in a sink in another room. This was… awkward? Shameful?
Peg: “No. Uh… Wow. Sigh.”
(P.S. I was NOT fat, but that’s another blog.)
In all fairness to that now long-retired doctor, when he was in medical school, our type of diabetes was called juvenile diabetes and those of us who did make it to adulthood many times were very ill or disabled from the ravages of this condition and there were many of us who simply didn’t make it at all. We didn’t have the self-management knowledge or the real time day-to-day diabetes medical devices we have now. We didn’t have better insulins that help us manage our roller coaster blood glucose levels. And because we didn’t have those tools, our Type 1 diabetes management was always a shot in the dark guestimate at any given moment in our day. In short, it was just dreadful.
So because I was sitting in this doctor’s office, healthy and productive, and no longer a juvenile, he made the assumption that I had to be a Type 2. Well, SURPRISE! I’m Type 1, I’m not sick, I didn’t die, I pay my taxes and I’m here to cause some trouble. And I was reminded that someone had to come in last in their medical school class and perhaps I was sitting across from him at this very moment? Just a thought but I digress.
Actually, that doctor wasn’t the only misinformed health care professional I had come across in my diabetes career. I was once asked by a young pharmacy student, “At what point does a Type 1 diabetic become a Type 2 diabetic?” I literally laughed out loud because I honestly thought he was joking. But he wasn’t.
Today, most health care professionals clearly and specifically know the difference between Type 1 and Type 2. But there is a group of people who are still lagging behind the times and who simply need more information and that is society at large. It’s very confusing to them, and as a result, they lump all of us under a singular “diabetes” umbrella, as they believe that we are all the same. So it seems that we adult Type 1s who have officially aged out of the juvenile stage and who aren’t sick are now going around confusing everybody.
Sorry. I lived.
Let’s start with an analogy. Heart disease. Most people are aware that there are many different kinds of heart disease, some genetic, some lifestyle, etc. And even though some of the time they share similar treatments, complications or outcomes, we know that they are looked at and treated very differently. What may work for one heart condition may be irrelevant in the case of another type of heart condition.
Now apply diabetes to this simple analogy and you will see that, we too, are different, with different needs and treatments. In short, we are not your grandma’s diabetes, even though there are now grandmas with Type 1 because remember, we live!
But lets be clear, both Type 1 and Type 2 are defiant and time-consuming. But because we, as Type 1s, are completely life-dependent on daily insulin in order for our very survival (no matter what we eat, how much we weigh or our age), we suffer a daily acute condition. As Type 1s, we must become vigilantes, balancing our blood sugar numbers, our food, our exercise, our insulin all the while keeping track of where we are and what we are doing and what we will be doing. It is exhausting beyond measure, but we have to do it. We have to pay stealth attention to what is going on with our bodies at any given moment because if we don’t, we could literally kill ourselves by accident. In short, we live on the edge, baby. And we are a tough lot and nobody scares us. It’s that simple.
As a Type 1, I don’t know how long I would actually survive without insulin, but I have my guess. I remember once waking up with a 140 blood glucose before breakfast and by lunch, I was 180. I looked at what I was eating, counted the carbs and used my insulin pump to take my insulin. A couple of hours went by and I noticed my sugars had climbed to 250. I couldn’t imagine why, as I had taken the proper amount of insulin, etc., so I took a little more insulin to counter the high and went about my day. Two hours later, I began to feel strange and quickly checked my blood glucose and found an astounding 450 BG! What the? At that point, I knew something was wrong, and I looked at my insulin pump site that was attached to my abdomen. And that’s when I noticed that I had accidentally pulled the tubing from the site and that for the last six hours at least, I was not getting any insulin at all. I checked my sugars again… 487… then again… 501. Yikes! My sugars were going up right before my eyes. So what this tells me is that in the course of a few hours, I was hitting numbers I hadn’t seen since my diagnosis. At that point I realized that I wouldn’t survive very long without insulin. I thought maybe 2-3 days before I would slip into a coma? I’m not sure and I know everyone is different, but I really don’t think I could survive much longer.
I believe that many Type 1s will agree with me that this condition is cruel. In the beginning of our diagnosis, many of us had what is called a “honeymoon phase” where, after being put on insulin, our bodies kind of “woke up” and began to produce some insulin again. And the dialogue in my head went something like this: “OMG! Was I cured? Perhaps I didn’t really have it, maybe the lab made a mistake? I’ll be good! I promise. Yeah! I dodged a bullet with that one, etc.” And then, wham, the body decides, “OK, now that I’ve taunted you with a reminder of what you used to have, I will take it all away… again.”
Welcome to your new life. And you know, I think that that glimpse of “normalcy,” that window of remembrance, is just mean. Sinister really.
As people with Type 1 diabetes, we walk the line of life and death every single day. Literally. We look normal and healthy one minute, and then “sick” the next when our blood sugar numbers take us down. And then right after it’s corrected, we go about our day as if nothing happened. When I look at it from that standpoint, it seems to me that Type 1 is a perfect example of a Jekyll and Hyde syndrome, if there is such a thing.
So, back to my original point, how do we begin to education society on our Type 1 plight? Here’s what I do… I never say that I have diabetes. I always say that I have Type 1 diabetes. And then, if possible, I give that person a 30-second explanation of the difference. I figure that’s the best I can do at this point. And I look for opportunities to keep educating. I think of it as a grassroots effort to educate those around us. I know, sometimes it feels pointless or useless or you just don’t want to talk about it. But believe me, it really works. Try it. It creates a domino effect of knowledge.
And now I will leave you with a few things that you should never say to a Type 1:
If you lose weight, you can go off insulin. (Nope.)
Do you still have diabetes? (Uh… Duh.)
You shouldn’t eat that. (Just shut up already.)
Why is your blood sugar so high/low? Why do you always do that? (Oh, I thought it would be fun.)
My grandma died from diabetes. Poor thing, she had no feet. (Again, shut up.)
Oh, so you have the “bad” kind of diabetes? (It’s all bad.)
Aren’t you too old to have juvenile diabetes? (Yes. When I hit 21, “poof!” my Type 1 diabetes vanished — not.)
And the biggee. As the person with diabetes runs to the kitchen and begins to rapidly drink juice five minutes before dinner, never say, “Don’t spoil your dinner.” (That’s just rude.)