A Journey Through The Three Stages of Self-Management
There’s an old joke about university degrees: As an undergraduate, you don’t know anything. When you get your master’s degree, your professors don’t know anything. And when you get your PhD, no one knows anything.
This reflects the sometimes strange, anticlimactic disillusionment people have about higher education, but as you can imagine, it could apply to many things.
“Wait!”, you’re wondering. “How do all these relate to the business of Type 1 Diabetes (T1D)? You know, the disease that sprung up on me while I was minding my own business gardening in the yard, when I suddenly fell into a coma. Yeah, that. I’m not laughing.”
I know. I understand. I was diagnosed with T1D in 1973 at the age of ten. So I get it. But now that you’re living with it, you’re wondering how to make the best of it, or get healthier, or even ‘what the hell is diabetes anyway?’
Isn’t that weird? Getting diabetes isn’t like getting cancer or heart disease because you know what those diseases are. Most people who get Type 1 Diabetes never heard of it, yet are instantly required to be as knowledgeable as doctors and scientists to take care of themselves, because otherwise, life could become a living hell.
That learning process about T1D is a multi-staged process akin to my joke about higher education: As you go through these stages, you feel an ironic sense of both achievement and pessimism. Your achievements are from your improved understanding of your disease and that you’re doing progressively better, while at the same time, you realize just how vastly complex T1D is, and that no one really knows anything.
But look at the bright side: Unlike the PhD student, learning about T1D won’t accumulate a lifetime of student debt.
Life with T1D begins with by setting expectations. My first day was April 2, 1973. After the blood test came in positive (my glucose was in the 600s), the doctor burst into the hospital room where I was staying, and instantly announced that a cure for diabetes was only 10–20 years away. “By 1990, at the latest!”, he announced optimistically and confidently, as though he were delivering a campaign speech to an auditorium full of voters.
Over the next few days, he and all the other diabetic educators told me to think of T1D like a race: Just try not to die for another 20 years or so, and it’ll all be over. Naturally, I believed it. Besides, there was nothing else to do, but wait. In those days, there was no technology to manage the disease — not even a way to test blood sugars at home. So, day-to-day management consisted entirely on how I felt.
While my expectations of the day were “don’t die,” time has passed, and now people are living longer, and aside from highly uncomfortable “events,” it’s easy and possible to achieve the lifespan of non-diabetics.
That’s actually saying a lot, given where we came from. Today, there are many more tools are available, such as continuous glucose monitors (CMGs) and insulin pumps (some are automated), apps and unlimited cellular data plans, so the ability to manage the disease is not only easier, but better.
While nice, these new technologies also make things more complicated. And that’s important because, the one thing that hasn’t changed is the fact that we’re still human beings with extremely complex biologies that cannot easily be reduced to a finite set of rules.
That is the one bit of wisdom that does not easily apply to any other disease. Cancer, heart disease, and many chronic diseases have narrower therapeutic options: You do “these things” and you take “these drugs” while you otherwise try to live a normal life. That’s not what T1D is — there is no more “normal life” unless what your life already consists of constantly monitoring and tracking every since thing you eat, do and think. Moreover, how your body responds to exactly the same thing may not be anything like what others experience.
Your journey through this learning process can be broken down into three distinct phases, just like going through graduate school.
Stage 1 is where you rely 100% on your docs because you don’t know anything else. So, you do what they tell you to do. When you do well, they reward you with compliments, and when you don’t, they give you a stern look of disapproval and make you sit in a corner for 15 minutes, because that’s as long of an appointment you’re allowed to have.
As time passes and after having gone through about 20 endocrinologists, you reach Stage 2, where you realize that your medical care team (and other experts) don’t know as much as you expected of them. It’s not that they don’t know stuff, they do. But they don’t know as much as you want them to know, because you’re now experience those “unexplained situations,” that I was just referring to — your body isn’t reacting the way it used to, or how others experience it, or as your doctor predicted. Stage 2 is that phase of learning that T1D is too complicated for any one person to know enough. You have to rely on lots of different sources of information.
Clinicians learn how to deal with patients, diagnose conditions, and assist people in obtaining care, but they’re not Scientists, who have deep academic backgrounds, understand the deeper nuances of biological functions, and conduct detailed studies that examine nuances of medicine. You want to combine these fields of expertise into one person, but you can’t.
Midway through stage 2 is when you realize that living with T1D means that you experience things that clinicians aren’t prepared to answer directly, or easily, and certainly not within the 15 minutes that your appointment provides. And you are a one-person research lab, so you get to play scientist, where you have 24/7 access to a real diabetic patient upon whom you can conduct your own studies to see what actually works and what doesn’t.
You also learn from other diabetics, who themselves are also individual research labs, who impart anecdotal information that seems quite useful.
At the end of stage 2 is when you start peeling away from your endocrinologists (emotionally) and just use them for prescriptions, blood tests and checking in now and then.
Stage 3 is when you finally realize that all the other T1’s you’ve been learning from are also islands of their own, because T1 is really an individualized disease. While the science and biology of the human body does follow patterns, the bell curve of “normal” is so wide and deep and broad, there really isn’t a “normal” type 1 diabetic that you can emulate.
It’s here where you realize that no one really knows enough for you to follow their specific guidance. General rules sort of make sense, but in reality, nothing matters to you except your own empirical experiences. And the decades it took to come to this realization is when you come to peace with it. This is when you’ve got your PhD in T1D self-management.
Now, just because you get your PhD, doesn’t mean the learning process is over. As Aristotle said, “The more you know, the more you know you don’t know.”
The amount of things to learn about T1D will always, always be far more than what you or anyone else can take in, largely because we only know probably 10% about the disease itself. And I just made up that number! Ha! See, if I’d said 11.25%, you’d be more likely to believe me because people think that non-round numbers are never made up. In fact. 82% of people believe that. Ha! You fell for it again! You see where this is going. You don’t know what or whom to trust.
Rule #1 of type 1 diabetes management: “The more confident anyone is about anything they recommend, they more likely they are wrong.”
Whether it’s a particular diet (high carb? low carb? keto? you name it), or whether to use a pump or stick with manual injections, it’s never ever as simple or black-and-white as some people claim. No many how simple they try to make it sound, or the easier they say it is to do, or the kind of results you can expect to get — they’re wrong.
The truth is somewhere in the middle because (sing along with me now) T1D is a highly personalized disease, people’s metabolisms are different, and yada yada yada. That’s right, just keep remembering that. Or not. You don’t have to because, one way or another, life’s experiences will teach that to you in the end.
As you read this, I can see what you’re thinking next: “Fine, I get it. But I want to go through those three phases really fast by getting a quick crash course in T1D.”
Well, that’s an excellent attitude, and you definitely should learn as much as you can, which leads me to:
Rule #2 about T1D: No information will make sense to you — I mean, really get into your soul — until you experience it for yourself, and experiences don’t happen quickly.
Experience takes time and repetition to really, fully grasp. Again, repeat the mantra, “T1D is a very complicated disease.” What worked once may not work again. And then suddenly it works again. This series of experiences can’t be rushed; they come at the pace of life. And this reminds me of another bit if wisdom:
It takes nine months to make a baby, no matter how many women you throw at the project.
While you cannot speed up the process of learning, you can increase the amount of stuff you learn. Only knowledge will help you succeed at managing the disease, but it also helps you cope with it. As anyone with T1D knows, there are some hellish times. The agony of severe hypoglycemia, and the near-death experiences that come with diabetic ketoacidosis (DKA) is worse than what terrorists do to prisoners. So it’s very easy to fall into mental decline.
Rule #3 about T1D: Knowledge is the long-term antidote to emotional stress.
The secret is appreciating T1D for what it is. I don’t mean enjoying it. I don’t mean liking it. I mean recognizing it for its power, size and impact, like the size of a huge wave on the beach, or an enormous wind storm, or any other act of nature. T1D not personal. It’s not about you. You’re not cursed. It’s just nature doing its thing. A mountain is enormous and grandiose, but it’s just a mountain — a lot of boring rock with snow all over it. A river is just a river. T1D is just a disease.
This won’t mean you’ve gotten the disease entirely under control, nor does it mean you won’t suffer its consequences. But compartmentalizing it as a mere biological process, indifferent to you as a thinking person, makes it less threatening as an adversary. Those who respect and acknowledge the disease for what it is don’t conquer it or try to cure it; they work with it, like it’s part of nature. After all, it is.
That’s when you come to peace with it. And the sooner you do that, the rest comes much more easily.
I have to take a break now because my blood sugar just dropped for no good reason. I’ve got to go eat something. I’ll be right back.
Ok! I’m good again. Let’s continue.
Stage One: Onset of T1D
The first stage of T1D is the day you’re initially diagnosed — you’re an undergraduate. You don’t know anything, so your care is managed for you. You learn the most basic rule about Diabetes there is: Insulin carries sugar from your bloodstream to the cells that use it as fuel so you can live. “T1D is basically that simple,” they tell you: “It’s all about balancing your food intake with your insulin dosing. As long as those remain in balance, you’re in good shape!”
Ok, that makes sense. It really is simple. Huh. This college thing is going to be easy, you think. All that talk about infinite knowledge was just to scare me, you think to yourself. After listening diligently and taking notes, you think you got it down, but to be sure, you raise your hand and ask, “Insulin is a what?”
Then they teach you about counting carbs, fats and proteins, which you then use to calculate how much insulin you take when you eat. Again, pretty simple and straightforward. Just read the labels on the food packaging, they tell you. Done! That was easy! So you give it a try: I’m going to eat this Snickers bar and bag of Doritos, which the package says contains 30g carbohydrates, and … WAIT! I was going to eat that! Give it back!
Ok, fine, you say to yourself. You understand you have to eat “healthy” now. At least, healthier. You still think this is going to be easy.
Later that week, you go to a restaurant with a friend and you place your order. You have your notebook of foods and carbohydrates at the ready, and when the waiter brings your plate, you look at it and…. Uhhh… wait. What is that thing next to the mashed potatoes? Your friend informs you that it’s rhubarb. Rhubarb? How the hell do I count rhubarb? They didn’t list rhubarb on the sheet they gave me in class! Waiter! Take all this back. I’ll have coffee.
You test your sugar, and your friend says, “Gee, 150. What does that mean? Is that good or bad?” You glare back at him with a confused look, “150? Where do you see that?”
A few nights later, you have your first severe hypoglycemic reaction, which is scary as hell. After you recover a few hours later, you immediately login to your online dating profile and update it to read, “Prefers someone in the healthcare space. Must be able to lift a limp body at a moment’s notice. Open to any astrological sign.”
Congrats! You just completed your first week of living with T1D. You’ve taken studious notes, which you intend to discuss with the doctor on your next appointment. When it finally comes, you have 15 minutes, so you hurry. It takes you 14 minutes and 30 seconds to go through all the notes and questions, and he replies with the recommendation to switch your insulin type to a new kind recently invented in Switzerland, where studies show that it helps hamsters digest sunflower seeds much better. Sounds great! But your pharmacy tells you that your insurance company won’t cover it without a “prior authorization” which must also be accompanied by a note from the Hall Monitor confirming you were excused from nutrition class.
You get the doctor’s assistant to provide the preauthorization, which they could have easily done by phoning it in, but instead they chose to “fax” it in, which anyone younger than 40 doesn’t even know what that is. You see, this is when you use the telephone lines like the internet. Oh, wait... I have to explain that “telephone lines” are these copper cables they wire into homes and offices before wireless technology was around. And it goes really, really slow, like when you try to pirate your neighbors wifi to download movies. So, now, a fax machine is this really huge printer-like device that connects to those phone lines, and then … Ok, I can see you’re not paying attention. I’ll move on.
Anyway, once the doctor’s assistant figured out how to work the fax machine, it’s sent to your insurance company, which then sends you a denial letter… three weeks later. You then spend the next month arguing with various levels of customer service representatives over the phone to get the denial overturned, making no progress at all, only to eventually learn you were talking to the cable TV provider all this time. On a positive note, the sympathetic agent gives you a free month of HBO, followed by a request to complete a 15-minute online survey giving her five stars.
Despondent, you spend the next few weeks wallowing in your diet coke and broccoli, wondering what you’re going to do with yourself, and how you miss eating ice cream and Doritos. As you approach the final days of your free HBO period, your roommate finally suggests you try to socialize with other T1D’s online. “Join a Facebook group for diabetics!” they say with a sort of naive optimism that instantly answers the question on why your roommate still can’t find a job.
Whatever. Fine. You join a few groups, attend some meetings, and shockingly, for the first time, you feel some comradery. You befriend Carol and share stories about how your blood sugar went really high during a movie, and you have to leave a lot to go to the bathroom. She commiserates, but she can’t stop talking about moving to Florida, and how she’s got her eyes on this condo. It’s a timeshare. She shares photos.
For the most part, you deal with life. Maybe you pay attention to your glucose levels, maybe you don’t. It depends on your mood.
All the T1Ds you meet talk about how much work it is to manage T1D. The Facebook group is the most vocal about it. They rant. A lot. But it’s mostly just venting. There’s that one guy, Herb, who always posts this vent: “How many times do I have to explain to my friends that type ONE diabetes is not the same as type TWO diabetes! They’re completely different diseases!” You actually use this particular rant as a milestone marker because he says it every New Year’s Day when he describes the heavy night of drinking with his friends the night before. Still, he’s right. Several people reply to Herb’s post with, “Uh… really? Type 2 is different? Oops, sorry, I joined the wrong group.”
Another discussion that comes up a lot is triggered when someone asks, “My son just had a severe hypoglycemic event and had to go to the ER. He can’t describe what it feels like, so I thought I’d ask here. So, what’s it like?” That question is like flicking your finger on the Diabetes social media fish tank: All the T1D guppies dart about on their keyboards trying to explain their experiences. And then, like a phoenix rising from the ashes, the sage old woman Dorothy swoops in and says calmly, “Honey, we can’t describe it. You have to experience it yourself. But let me put it this way. When terrorists capture prisoners and torture them, one of their techniques is to give them insulin. Nuff said.”
She earns a lot of likes for that comment.
Her posting piques your awareness: You have to experience it. That hits the nail on the head with many things about T1D. Most social network banter about T1D is really just about how hard it is to live with. It’s so much work. And expressing that always builds friendships. People really do get close.
And they’re not wrong: T1D is the most attention-intensive disease there is. As measured on a minute-by-minute basis, T1D requires more continuous attention to detail than any other task in life, let alone a disease. One needs to be ready to take action at any time to avert a crisis that could easily be right around the corner. It’s almost as though breathing itself required having to know when it’s time to take a breath, rather than having your body do it automatically.
And then comes the scary news: Diabetes accounts for over half of those with kidney disease, and almost half of all diabetics have or will suffer from retinopathy, an eye condition that can cause vision loss and blindness. T1D also remains one of the leading contributors to heart attack, stroke, and limb amputations.
With this yuckiness hanging in the air, you decide you really need a break from the extreme darkness of it all, so you relax and binge-watch Breaking Bad. “These people have it so easy,” you think to yourself.
A few years go by, and despite the struggles, you make some progress here and there. Still, the frustrations mount: the unexpected highs and lows glucose readings, the sleepless nights, and the mounting blood pressure. The worst part is, you just can’t escape this thing — there’s no way out.
You meet up with friends for dinner, and are met with an unexpected surprise: They notice you’ve made a lot of improvement. You’re more confident in dosing yourself, you know that 200 is bad, and 100 is good, and that a shard of rhubarb at this restaurant requires 1.5u of insulin, but the one at the other restaurant requires 2.5u. You snidely comment that “carb counting” is not only fraught with randomness, but it’s not nearly as useful as real-world experiences. It’s not about counting actual carbohydrates and the insulin ratio — that’s way too simplistic. You also have to look at where your blood sugar level is, and, what direction it’s going. And how fast is it rising or falling. And when you at last time. And did you exercise today? Oh, and what will you be doing later? All that matters in your dosing decision too.
This makes you think back to your nutrition class when you were first diagnosed and how they were so simplistic about things, and that they don’t really know how to properly dose. These so-called “teachers” aren’t diabetics — they don’t really know.
But you are so much better at it now. You can now order whatever you like and instantly know how much insulin is needed, just by eyeballing it because, well, you can just tell. It’s hard to describe why. As you explain all this — the first time you ever really verbalized it — you realize just how much you’ve learned. You’re feeling a bit proud of yourself. Meanwhile, your dinner guests are looking at each other, wondering how to stop you from telling them things they don’t understand. One perks up with a question, “How’s the HBO subscription working out?”
You’ve known for a while that the disease is more complicated and volatile than you had assumed, but are now feeling like you might be able to live through it. Yet, you’ve also learned enough to realize that your original medical team oversimplified it just a tad too much. “Why did they tell me that would happen!? Surely, they must have known!” But they didn’t. This pisses you off.
Congratulations! You’ve advanced to Stage Two.
Stage Two: Your Master’s Degree
You now know enough to be productive, and your new wisdom is starting to exceed others — not everyone, just those so-called “experts” that you now realize don’t really know anything. You really know your way around the disease now. True, there are still lingering problems, like those frustrating highs and lows, but also new problems, like that recent increase in urine proteins that may be indicative of kidney disease. That’s not a good sign, so you make a mental note to back off on the weekend drinking parties at the local college frat house that you’re clearly too old to attend anyway. But your other progress gives you confidence that, you’ve come this far and kept at it.
You also feel like the Facebook group isn’t helping as much as it used to because the same questions come up constantly by new users joining the group and asking dumb questions like, “So, what pump do you guys like?” And that question always ticks off Frank, who replies instantly with his lengthy diatribe about the medical industry is just out there to make money, and that all that technology is just junk anyway. “It costs ONE CENT to make a whole vial of test strips, yet they charge you $30!”, which always gets lots of thumbs-up and smile emojis, but the repetition makes your eyes roll.
You begin to suspect Frank’s a bot, a theory that you share with Carol, who actually turns out is a bot, and tries to talk you into buying into that timeshare condo in Florida she sent you photos of. You feel so disappointed that you actually started feeling affinity to Carol, who, it seems, is just a software program designed by some guy in Eastern Europe. Still, you pause to think about the great talks you two used to share … And then you click the unfriend button.
But you have a new lease on life. You switch doctors — a few more times — and you expand your network beyond just social media. You attend conferences, and even dip your toes into research papers by academics and doctors who study and teach, but don’t see actual patients. Damn those guys! These articles really open your eyes! Not only is that stuff interesting, but they dispel all the myths that you thought were true about almost everything, especially diets. “Don’t even get me started on diets!”, you once roared at some guy, who happened to be a valet attendant that was offering to park your car at a restaurant. “Diets are all stupid! I can’t believe people fall for them! It’s all about calories in, calories out. It’s not that complicated!” You toss the guy a twenty along with your keys and an apology.
You read a study with intense fascination on what alpha cells are, and wonder why no one told you about those when they explained beta cells. You swipe through page after page of another study showing how exercise affects glucose control differently as you become in better shape, all because of the way the mitochondria uses different kinds of fuel sources: lactate, lipids and glucose. You are able to do all this with ease, totally unaware that you’ve been ignoring your dinner date who’s been telling the waiter, “Just another moment, please.”
You’re clearly learning a lot, and are making some improvements, but the stress is still high, and wonder what the secret is with others who do really great, such as Linda at work, who’s been a diabetic for 35 years and has that annoying sparkle in her voice when she tells you her A1c is 5.9. Damn that girl.
Struggling to wrap your head around all this, you try a bit of the new age route: Meditation. You stretch out a bamboo mat, put on a playlist of Peruvian flute music, buy one of those little waterfall trinkets on sale for $9.99 at CVS for the water sound effect, sit cross-legged with your hands outstretched on your knees. In your left hand is a chardonnay and your right hand is your smartphone, where you’re playing Words with Friends with some player named “NO_CHAT.”
Alas, meditation doesn’t work. You gave it your best shot, but there must be a better way.
Things take a turn that night when, in your dreams, Aristotle appears before you, and in a sage voice, he speaks to you. Unfortunately, he’s speaking Greek, which you don’t understand, but because it’s your own dream, there are subtitles: “Each time you learn something, you open a door to a room where there are ten more doors. And you know that each door goes to another room with ten more doors. You will find peace with knowledge. Keep learning.”
You wake refreshed and energized. You’re willing to enter all those doors, because the prize is perfect T1D control, and if you can achieve it, you don’t really have to work at it anymore! As you get out of bed, you notice your right foot just won’t stop burning. And you don’t want to take the meds for it because they interfere with the blood pressure medicine you’ve been taking to help stave off kidney disease. You make a note to call your doctor. Again.
You finally get to see her, but are growing increasingly frustrated that she can only spend 15–20 minutes with you once or twice a year, and you can’t possibly cover all the questions and problems you have. You want to get into the details that you are now more educated on, and you want to learn more. You also ask her why he stopped replying to your emails, but the nurse comes in and asks if you’re still using the same insurance carrier and that you forgot to take your receipt for the copay at the reception desk.
Then you realize the nurse was a decoy! While she was talking, the doctor snuck out without you noticing! Damn, she’s good. Must have gone to Harvard. You begin to suspect you’re on a blacklist held by a closed Facebook group of endocrinologists who keep diligent records of patients that “know too much,” and exchange ideas on ways to avoid them.
You later get an automated email from the doctor’s office — an “after visit summary” — that says your doctor advises macro-level changes like switching insulin types (again) or using an insulin pump, even though she should have known you already tried one years ago, and hated it. There are also throw-away comments like “have a snack before bed,” and “try changing your nighttime basal rate”, but these never really do the trick, which you make a note to remind her about for your next appointment scheduled for the following year. But it never happens because you will already have switched doctors by then.
You talk to other T1Ds that seem to be under tight control, but everyone seems too simplistic. No one gets into much detail. One recommends the book by Dr. Bernstein on the low-carb diet, but his enthusiasm is just too intense. You look up research papers on low-carb diets and find that most researchers say this is hardly a panacea. You bookmark a comprehensive meta-analysis study titled, Low-Carb and Ketogenic Diets in Type 1 and Type 2 Diabetes, which summarizes the huge disparities of outcomes among those who try the diets, not to mention the other risks that low-carb intake might entail (such as poor gut microbiome and increased risk of hypoglycemia). You tell your contact about it, but he doesn’t even read the paper, and accuses you of being a heretic to the T1D community.
Another guy tells you about an opposite diet: the “high carb, low fat” diet promoted by a couple of doctors that seem to be more dedicated to selling you products with nutrients and such. Like the other low-carb diet guy, this guy is just as adamant that it’s a solution that works for all diabetics because, as he tries to convince you, “we’re all basically the same animal, so this works.”
Both these guys seem to be a bit ridiculous, so you finally resign yourself to approaching Linda at work, who always seemed overly eager to help, but somehow seems a bit “off.” You’re not sure how or why, but you just know. You set up a lunch date, where she joyfully tells you everything. Every. Single. Thing. In detail.
“I’m so glad you asked!”, she says with more enthusiasm than is legal in some states. “Let’s see. I use that brand of insulin pump, and I never use Fiasp, only Humalog, because you know what Frank on Facebook says — they just want to make money off of us. I calibrate my CMG several times a day. What else. Oh, and I only eat 20 carbs a day, along with tons of carrots and steamed veggies, and walk exactly 15 minutes after each meal, and I sacrifice one small furry animal on every other full moon near the magic stones on that hill behind the mall.”
At this point she stops, looks around to see if anyone is in earshot, and then edges really close and whispers, “Then I go have a sugar-free frozen yogurt at the mall. Yeah, I cheat.” You comment that sugar-free yogurt isn’t cheating. Linda doesn’t reply, but just keeps smiling and nodding to support her prior statement, as though you didn’t say anything. She also remains uncomfortably too close.
Sigh. You try to emulate what Linda does anyway, but it doesn’t work. 20 carbs a day? That’s impossible. She must either be lying, or doesn’t know how to count carbs. Probably both. Insulin pump? Nope, tried that. Failed. Then you realize Linda’s probably just got good genes. Nothing more. Not even the thing about small furry animals.
You try talking with someone else — a guy named Larry that you met through one of the JDRF events. You meet at Starbucks, where he takes forever ordering a particular kind of Latte that requires use of the really loud machine, which also takes a long time to make, forcing everyone in line to impatiently wait because their orders are really simple: plain coffee. This isn’t a T1D thing. It’s a pet peeve of mine that I needed to find a way to insert into the story. Ok, I got that off my chest.
You and Larry finally get your table, and he brings up the app for his insulin pump and starts to calculate his dose. “I might also have a croissant, which will be another 30 carbs…”, he says as he keys in the units on the screen. He then offers up more bits of very individualized details, like the fact that his insulin sensitivity is so high that he only doses in ¼ units for each 30g of carbs, but only in the mornings. In the afternoons, he switches to ½ units for each 15g of carbs. You ask what he does to avert overnight hypoglycemia, and he says, “Hit or miss. Ya just never know what’s going to happen! If I take too much insulin, my alarm goes off and I’m up for hours eating, waiting for my glucose to rise. If I’m wrong, my sugar’s sky high, and I’m up for hours taking insulin to bring it down. Either way, I’m not getting any sleep that night!”
He’s right. That’s exactly your experience too. You’re thinking maybe you can connect with this guy. But then he goes on: “Yeah, it kinda sucks, but I read online that your odds are a bit better when you use a Magic 8-Ball, although sometimes, you have to shake it twice because you don’t like the answer. It’s like calibrating your CGM sometimes when you don’t like what it tells you.”
Oh man, another idiot, you’re thinking. And that triggers an old memory of a quip from George Carlin: “Did you ever notice that everyone that drives slower than you is an idiot, and everyone that drives faster than you is a maniac?” That’s what the world of T1D feels like: Half the diabetics you meet are idiots, and the others are just maniacs. It’s almost as bad as dating.
[ Editor’s Note: The author inserted a long diatribe on how bad online dating is, but we had to remove it because it’s unrelated to the T1D story. ]
After you part with Larry, you walk towards your car, and find yourself humorously considering his Magic 8-Ball idea, because Larry’s right about one thing: There’s a lot of randomness to T1D. Your glucose could skyrocket for no apparent reason, while it can also crash — also for no good reason — leaving you in a furious panic because you just never know when the big one is going to hit. Still, you pass on the 8-Ball idea when you figure insurance wouldn’t cover it anyway. Not even with a prior authorization. Damn insurance. On the other hand, maybe you can get another free month of HBO. Hmmmm…
This silly idea makes you pause and smile, but the smile fades as you realize these silly ideas are really just coping mechanisms to avoid the much more dire, traumatic reality: No matter how many people you talk to, the same principle keeps coming back, that T1D is a very individualized disease, indifferent to race, creed, socio-economic background, nationality, and even political party, which saddens you a bit because that’s where the real justice could be. You can’t necessarily copy what others do because their biology is just different than yours. You look up a study about genetic disposition to different treatments, only to learn that even identical twins sometimes follow different regimens. You’re really all alone with this.
This marks a tipping point where you recognize that your expectations of doctors and others are — and always have been — too high. Yes, some are helpful, but only in a certain context, and only up to a point. Such a uniquely individualized disease cannot possibly be managed by someone that doesn’t live with you 100% of the time. You’re disappointed in yourself that you suspected this was the case for the last few years, but you resisted. You held onto taking orders directly from doctors, largely because it never occurred to you to do otherwise. No one pushed you to be truly independent, not that they would have objected, but they’re not going to encourage it. And that’s when it hits you to be more independent. And, maybe, just maybe, that might be a good thing. Yes, it is a good thing. It IS!
Congratulations! You advanced to Stage Three!
Stage Three: Your PhD in T1D Self-Management
Welcome to stage three: The PhD. You are now independent. Sure, you still need your doctors, of course — you always will. They write prescriptions, after all. And yes, they are helpful, but only if you work with them wisely. You’ve been through enough of them that you settled on the one you’ve been working with for the past few years. You always figured it was because you were just tired of changing docs all the time, but when you really stop to think about it, it’s because you’ve learned the irreplaceable value of having a good rapport with a doctor. You clicked. T1D management is lots of research, coupled with your doctor’s input and your own experiences. It’s the dim lantern that allows you to navigate through the rain and fog of randomness.
Your doctors don’t really manage you anymore, you’re managing them. Big difference.
You show up for your next appointment, and he’s late — as usual — but you don’t mind. The receptionist says he’s still with a patient, but it shouldn’t be long now. You go to your usual spot in the waiting room and gaze out the window. The same window, the same scene, the same thoughts.
Forty five minutes go by and the nurse calls you in. You pause to allow the previous patient pass, an older woman with an IV hooked up to her in a wheelchair. Your doctor follows her out, and says something inaudible, but it lights up her face. The woman’s assistant gives you a friendly smile as he rolls her past you. You enter, and then pause to look back at them, and then at your doctor.
“She’s got stage 4 colon cancer. She’s really a trooper though.” He pauses and then looks at you. “She’s had type 1 diabetes since 1963. Amazing lady.”
As you go into the exam room, you enter with this new awareness in mind, of yourself and of your doctor. You don’t even have to talk about it; it’s just a known thing. It’s a nice, comfortable, bi-directional communication between you two. You know yourself well enough to do the right thing, and your doctor keeps you from going out of bounds. You imagine the kind of attention he must have been giving the older woman, and, you forgive him in your mind for having taken an extra 45 minutes.
As you think about it, you also forgive him for your prior admonitions of how he conducted his practice, that he never really spent time with you. Maybe he knew he just didn’t need to. Maybe he knew you were going to be fine on your own. Maybe he didn’t. Either way, you needed to get where you are, and might not have if all those doctors had given you what you thought you needed.
You also appreciate the realities of healthcare management: Doctors only have so much time, and there are lots of patients to see. They can’t possibly spend the time needed with anyone — and even if they could, nothing teaches better than real-life experience. You had to have lived with T1D as long as you have to understand this level of self-management. To be sure, not all your doctors might have been this way, but this man was. You feel lucky to have found him.
He brings up using an insulin pump, and you respond by citing a research study by the T1D exchange clinic, which finds that “there isn’t a substantial difference between A1C outcomes for those who take insulin injections compared to those who use pumps,” including closed-loop insulin pumps, which are supposed to be the next big thing.
In fact, those who use pumps do slightly worse than those who do multiple daily injections (MDI). You remind him that your A1C varies from 5.9 to 6.2, so you may actually do worse with a pump.
To your surprise, he acknowledges that study, and says that many of his patients also don’t like pumps.
“So why did you ask?”, you reply. “Well, many find them just more convenient,” he says, but this time realizes that you know what you’re talking about. “I’m glad to see you’ve researched it. That’s good.”
He then sets the print-out aside and looks at you closely and continues: “You’re right that your A1C is in excellent range. Statistically, you’re going to be as healthy as a non-diabetic. Yes, you’ve got issues here and there, and always will, but you can relax about these things. It’s time.”
As you leave, you shake hands in a new way — one that you hadn’t done before. There seemed to be a new kind of relationship. One with mutual understanding.
On your way out, you pass a young mother with her toddler sitting in the waiting room, awaiting their turn. She pricks his finger to test his glucose, and the child cries. She tries to comfort him and the two cuddle each other. You find yourself wiping a tear from your own eye as you realize what that child has in store for him, not to mention the mother who has to go through it with him. You imagine it must be even more horrible for a parent, who cannot possibly understand what it’s like to feel the effects of T1D, yet have to watch her child go through it. Oh, the future they will have.
Your doctor returns to the room to call for Mrs. Lopez and her son to come in. “I’m ready to see you now, little man. My, but you look great today,” he says with pure empathy. As she gathers her things and prepares her toddler to enter, you and your doctor’s eyes meet. He gives you a nod, but his gaze is not as his patient, but as a peer. One of respect and recognition.
The mother and child leave, and you’re alone in the waiting room again. Yes, you’ve spent years in this very room, going in and out of different stages of T1D, the advances and traumas. Yet, the one and only thing that has never changed over all that time, was this room.
You look out the window again and take in the view you’ve seen a thousand times before, but didn’t really notice it till now. There it is: A river. The sun is shining on it now, but you’ve also seen it in the cold, the grey, the overcast and rain, when the wind was blowing, and when the snow made it almost invisible. And then you realize the calm, obvious reality: It’s just a river, indifferent to you.
The Buddhist mantra comes back to you: Diabetes is but a bunch of molecules moving around your body, like water in the river, indifferent to whether it’s hurting you or helping you. Sometimes both. It doesn’t care. T1D is not personal. It’s no one’s fault. And you’ve come to peace with that. You’ve achieved Nirvana, and realize that you’d probably been there a while now.
Sure, the race will never end, because there’s always more to learn. Your T1D will vacillate. New things will be learned, and old therapies will probably fade away or mutate to something else. Self-management requires attention, but it’s not “work,” not the way the Facebook community had been complaining about it. It’s more about paying attention to yourself. It’s part of you. It’s more of an art than a science, though you need to be really sharp on the science to master the art. You think about that dream of Aristotle and the doors that lead to ever more doors. You now realize that the doors don’t lead anywhere; they’re just drawing rooms, each with enriching experiences of their own, where you further master your art. Then you move to another room.
In the world of T1D, there’s lots of information, but in the world of “you,” no one knows anything. Sometimes, not even you.
Congratulations, you’ve earned your PhD.