My Thoughts About Diabetes And Frustration


(Bill) #1

I’ve noticed a number of posts on the forum that have brought up issues of frustration. I’ve now had T1D for 60+ years so “I’ve been there” and will likely “be there” again. Getting your “butt kicked” is just part of “wrestling a grizzly bear” (T1D). What we deal with is no fun; some days it’s less fun than others. But it’s the disorder that’s “no fun” - it’s not us (unless we let it make us that way). Keep this point straight - it’s the disorder, not you.

I thought I’d share some of my thoughts about diabetes management and frustration. This is not meant as a scholarly work, or as an exhaustive treatise. Instead, it presents some of what I have seen regarding frustration and diabetes.

Back when I was doing the research for my doctorate I spent several months chasing down the history of diabetes management (this became the first chapter of my dissertation). In that review I discovered that, about twenty years after the discovery of insulin, articles began to appear in the literature offering the opinion that psychopathology was the reason some “patients” did not manage their diabetes well. In other words, the opinion was developing that poor diabetes management was an indication of an emotional or mental disorder. I thought that idea was wrong and, in the early 1980’s I gave two invited lectures in Dallas, Texas, where I presented the idea (this is the shorthand version) that successful diabetes management required a “skill set” - it was something that had to be learned, just like learning to drive a car or fly an airplane (both of which require constant attention and carry great risk). I “debunked” the idea that difficulties with diabetes management were an indication of psychopathology. I believe the diabetes community has come around to my idea. Diabetes management is a skill set.

But, and it’s a big but, we are complex and dynamic organisms. As far as diabetes management is concerned, our status as “complex and dynamic” means that our multiple tissue systems are in a constant state of change. Since our “needs” are constantly changing, management requires continuous monitoring and changes in course, just like driving a car or flying a plane. And, just like driving a car or flying a plane, there are times when things go easily and there is not much change required (like driving across the Plains of the U.S.). At other times there is a need to make repeated adjustments and the task can be very tiring (like driving on the Pennsylvania Turnpike). Sometimes being a complex and dynamic organism can make you wish you were an amoeba instead.

So, how does this apply to the topic of frustration? First, and this may sound stupid, “don’t take the frustrations of diabetes personally” (don’t take it as an indictment of you as a person). See it for what it is - a very challenging disorder to manage - more challenging for some than for others because of the nature of their physiology and morbidity (how the disorder affects them). My diabetes is very, very brittle - when it gets a burr under its saddle it can really take me (and my wife) for a ride - it’s just the nature of my diabetes. It’s not me!

Second, try to “flatten the dynamics.” In other words, try to limit how far the “ups” and “downs” can go. Start carefully tracking things like BG measures, insulin need, “seasonal changes” (yep, I actually wrote that), and other factors that affect management of your diabetes. If you haven’t done so, over the next couple of years (yes, it takes that long) watch to see how patterns develop in your diabetes management and, in the future, as soon as you see one of those documented patterns beginning to appear you can make adjustments quicker so that the “swing” you experience will be reduced.

Really? Yes, really. So, here’s an example of how this works for me. I am in the midst of having to lower all of my basals. Why? The season has changed from Winter/Early Spring to Summer. It happens every year and, as soon as I begin to feel “out of gas all the time,” and as soon as ALL of my BG readings are less than 80mg/dl, I know it’s time for the “seasonal change.” This will last for about two or three weeks and then I’ll have to raise them all again (my BG measures will all run high - that’s my cue to raise them). The same thing will happen in the Fall. It does this every year. Complex and dynamic.

I also follow a very strict diet - same carbs, same times, every day. That makes management easier. But if I am involved in physically-demanding activity for several hours in a day I know I’ll need to eat a bigger snack before I go to bed. And I’ll need to carry two packs of glucose gel in my pocket the next day instead of one. Extended physical activity wipes out my glycogen stores so I am more prone to hypoglycemia that night and the next day. Complex and dynamic. But really kind of predictable once you “learn the territory,” and the only way to do that is to “take notes” and identify the patterns that exist in your case of diabetes.

By the way, remember “complex and dynamic”? Well, it’s raining here today and I am going to get zero activity outdoors (my Apple Watch Activity App is going to go bonkers when it sees I’m not being active!). So, I plan to read a book on Java Programming all day (I lead an exciting life, don’t you think?). But when my wife gets home from work we will go for a walk, umbrella in hand. So, do I need to make changes in my pump settings? Absolutely! I’ll use a series of approximate two-hour temporary basals (one after the other) to try to keep my BG readings where I want them. And it will be an “all day” kind of thing. Complex and dynamic. Frustrating? Could be. But remember, it will just take me a total of 6 minutes to get this done (less than a minute for each BG measure/basal adjustment) and, when the day’s over, I’ll feel good and I will have read an, er, exciting book. It’s a rainy day and the above is what I do to manage rainy days when I can’t be as active as normal. Complex and dynamic, and I “know the patterns.” In a few weeks we’ll be off on vacation in the car; the same routine applies for both “car days” and “rainy days.”

Okay, what about frustration? Frustration’s okay. “What?” you might ask. Yeah, frustration is okay. Frustration is a signal that you don’t like how things are. And, frustration is a signal that you need to change “something.” But what do you change when you are “trapped” with a medical disorder that you just plain don’t like? That’s where the rub comes in! It’s “not fair!” You didn’t ask to have diabetes! And diabetes management is an onerous routine, and sometimes what you do just doesn’t work! It’s not fair!

Nope, it’s not fair. It’s just what it is. And it’s frustrating…potentially.

Remember those lectures I gave in Dallas (I mentioned them, above). The “other half” of those lectures outlined my idea that diabetes management should be considered “a job.” I went on to describe how the “skill set” of diabetes management tended to fall into an area of vocational activity that vocational psychologists call “conventional.” Those are jobs that emphasize “scripted activity” (same things done the same way every day) and “record keeping.” Sound familiar? Here’s the problem. Not everyone likes “conventional” jobs. Some people prefer “in the moment” kinds of jobs, working outdoors, and “building stuff” with their hands. Other people prefer jobs where they can be creative and, for lack of a better term, “artistic.” And then there are other people who prefer jobs where they “run the show” and have others do the minutia. Vocational psychology has defined six general areas of work; the major proponent of this theory was Dr. John Holland.

Okay, six kinds of work. So what? Well, here’s what. Psychologists doing research on Dr. Holland’s theory discovered that, when people pursue jobs that are consistent with their interests, they are rated by their co-workers as being successful at their jobs. So, if you perform a job that “floats your boat” so-to-speak, you’re going to do it well. (You know there’s a “but” coming, right? Yes, there is.) These same researchers found that, when people are performing jobs that they don’t like, over time they will be rated by their co-workers as not performing the jobs well - they won’t be successful. Oh! So, if they don’t like the work their performance will be “sub-par.”

Here’s the other part of the above, and it’s important! Those researchers also asked workers to rate their levels of satisfaction with their jobs. Those who were in jobs that they liked reported they were “satisfied.” Those who were in jobs they didn’t like indicated they were “dissatisfied”; you can take dissatisfied to mean “frustrated.” So, the workers in jobs that they didn’t like were less successful and “frustrated.” Sound familiar?

I need to stop a minute and make this point. This vocational psychology stuff is all “normal” behavior; poor-performance and frustration because of a job you don’t like has nothing to do with psychopathology - it’s just how people are. Got it?

So, for those of us who have diabetes, if we don’t like the job (“diabetes management”), we won’t be successful and we’ll be frustrated. So, what do we do?

There are two issues at play here (in my opinion). First are the demands of the job. Second is “temperament”; I did not discuss the issue of temperament during those lectures in Dallas – I now believe it is an essential element in “getting the job done” (more below).

Regarding the job demands of diabetes management – I believe getting the job done (or not) is a matter of deciding who’s going to dictate how you live your life. It can either be you, or it can be the grizzly bear (T1D). You decide. And if you think, “Well, I’ll worry about it later,” then you’ve put the grizzly bear in charge – somebody fetch the bandages, please.

If you choose to take charge of your diabetes management, then, with some practice, management will only take about fifteen minutes a day. After several weeks of diligent diabetes management, you may find that you experience less frustration. Why? Because your confidence in your management skills will increase and diabetes-related interruptions will take less of your time. Here’s the “sneaky” part – if you’re getting the job done you’ll spend less time frustrated with the fact it needs to be done. It’s the frustration with the tasks that really eats up time (e.g., all the “I don’t want to do that” and “Why do I have to do that” kinds of thoughts).

If you put the grizzly bear in charge, you’ll simply have to suffer through what the bear does to you; that leads to chaos and can take all your time every day. Ugh! It’s a choice – who’s in charge?

But will you learn to “like” the “job” of diabetes management? Not really. If you don’t like managing your diabetes, chances are you will never really come to “like” the “job.” But, your life will get better and you’ll be more in charge - and you’ll begin to appreciate the results of your efforts. Let me write that again, “you’ll begin to appreciate the results of your efforts.” But, “like” the “job?” No, I don’t think so. You’ll simply grow to consider diabetes management as something you do, like brushing your teeth, or washing your clothes, or many of those other things we do as part of life. It’s all about putting the demands of diabetes management in perspective – it’s just part of life for those of us who have T1D. When you can get your thinking to this position (i.e., “wrap your head around it”) more of the frustration will ease. Diabetes management is not “because of you” nor is it an indictment of you as a person. It’s just diabetes.

Diabetes management is not foolproof. Frustrations can arise when things “go wrong.” Frustration under those circumstances is certainly understandable. I think we all experience similar feelings when things “don’t work.” But there is usually a reason that things go wrong. Here’s an example. For me, if I put my infusion set in a certain area of my left flank (just about the area of my left kidney) my insulin absorption may slow to a crawl – it’s an area on my flank about two inches square. So, when my “rotation schedule” requires me to use a site near that area I always watch my BG readings even more carefully. From my data and experience I know there is a problem using that specific site. I may have to adjust my basals upward or I may have to jerk that puppy out of there and use a different site. My point is this – sometimes you have to make “executive” management decisions – it is better to make those decisions based on recorded pattern data and experience, rather than frustration. Dawg! Complex and dynamic. Yep, being an amoeba looks pretty good sometimes.

When things “just don’t work,” think back carefully over things that have gone wrong in the past. Manage! If there is a pattern to those things, such as a repeated mechanical failure, a basal that went wrong, difficulties with BG after eating a certain food, or whatever, figure out the cause. If you can’t figure it out, visit with a competent diabetes educator or your physician. Don’t be content to be frustrated. I know that’s a funny statement, but some people put up with being frustrated rather than doing “the work” required to resolve the frustrating circumstances; they don’t want to “have to” manage their diabetes. They get caught in a cycle where the lack of resolution of the problem “fuels” the frustration. Manage instead. When your data tell you there’s a problem, get it resolved.

And that takes us to the issue of “temperament.” Oh, boy! Very briefly, there are some people who simply will not tolerate having demands put on them (they don’t want to “have to,” whatever it is). They may become extremely frustrated with the demands of diabetes management, but they may not openly voice their frustration. Instead, they may nod in agreement and “promise” to perform “the job.” But, when it is time for their next checkup, their HbA1c will be through the roof. When confronted, they will insist they did everything “by the book.” They’ll agree to education sessions and to following their management routine. They’ll make all the right “noises.” And as they leave their physician’s office they’ll pull a Butterfinger out of their pocket and eat it.

Those people are doomed from day one; there is little-to-no hope for them. Their temperament, marked by a pathological resentment and frustration, is so “hidden” that they may not be aware of it and of how it works against them. And, when you look closely, that same resentment and frustration is evident in every part of their life, not just in their diabetes management. I have seen many of these people; it has been painful to watch as their resentment and frustration leads to their deaths.

Then there are “the rest of us.” Temperament often determines how well we manage diabetes as we transition from initial diagnosis to long-term management. Most of us are generally willing to work at diabetes management soon after initial diagnosis. But, as the reality of long-term management becomes more apparent, some people go a bit “off track.” Sometimes this loss of direction or “focus” is because of frustration with the demands of “the job.” At other times loss of focus can be due to overwhelm, grief, and/or other factors. These issues, too, can be described as “frustration.” In an ideal treatment setting the cause of the person’s management difficulties would be discussed and they would be provided with appropriate referrals to attempt to resolve their frustration. The point is, temperament and frustration can negatively-affect diabetes management. With help the “effect” can be minimized.

In closing I’d like to offer this. Near the top of this post I acknowledged that, at times, I have been frustrated with my diabetes, too. I wrote, “‘I’ve been there’ and will likely ‘be there’ again.” One of the things I have learned about diabetes is to “label it honestly”; when it becomes frustrating I acknowledge that frustration (often to my wife). And then I set a timer (either in my head or on my smartphone/smartwatch). I only allow diabetes-related frustrations to take up five minutes of my day, period. Then, when the timer goes off, I either continue to resolve the cause of the frustration (if I haven’t already gotten it resolved) or I go and do something I want to get done. Decide how much time you want to “give up” to frustration. Set a timer. When it goes off, do something else (other than being frustrated). The more often you do this the easier it gets (it’s a variant of the cognitive-behavioral technique called “thought stopping”).

We all have video recorders of sorts running in our heads. And when you least expect it “someone” is going to push the “play” button. You decide what you want to see on that movie when it plays. You can either write and act out the movie you want to see, or you can take what the grizzly bear gives you. I have very little room for frustration in my movie; but it happens. No more than five minutes a day! I have too much else to put on my movie.

Cheers!

Bill


Proper management and work full time