You’ve Got Type 1 Diabetes! Let the Fun and Agony Begin
A Journey Through The Three Stages of Self-Management
[ I originally published this piece in 2020, just as the pandemic was seriously setting in. I had time on my hands, nowhere to go, and needed to get a few things off my chest. The article was passed around the T1D community for months initially, but because it still gets mention now and then, I decided to post it here on my substack as part of my growing compendium of articles that illustrate the true complexity of learning to live with T1D. ]
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 possibly even get healthier. And this is where the joke come into play: The more you learn about — and experience — T1D, the more you feel a paradoxical sense of achievement and pessimism at the same time. Or, as Plato said, “The more you know, the more you realize you don’t know.” And neither does anyone else. Just like the college student’s experience, you’ll come to realize that those teaching you don’t really know as much as you thought they would — or should. And the more you learn, the more you wonder whether anyone really knows anything.
But look at the bright side: Unlike the PhD student, learning about T1D won’t accumulate a lifetime of student debt.
So, let’s run through the basics.
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Learning to live with T1D begins with by setting expectations. My first day was April 2, 1973. After the blood test showed my glucose was in the 600s, the doctor burst into my hospital room and announced that a cure for diabetes was only 10 years away. “By 1980, 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 gave me the basics: Insulin brings your glucose levels down. Food brings it up. “Now that you know that, try not to die, at least till 1980.”
Simple, right? A few days of this, and they scoot me out the door. Yes, me, a ten-year-old kid, entirely on my own. Well, my parents were there, of course, but they weren’t much help. Oh, parents try, bless them, but mine were, well, let’s just say “sympathetic observers.”
One area about T1D that hasn’t changed is the familiar fantasy that a cure is “just around the corner.” Another is that the disease will be managed by AI and automated insulin pumps. The list of fantasies is endless.
The American journalist, author and critic of the early 20th century, H. L. Mencken famously said, “For every complex problem there is an answer that is clear, simple, and wrong.” T1D is exceedingly complex, so do not expect there to be easy, simple solutions.
You can’t just binge party away one night and not expect some pretty uncomfortable things happening. If it were just puking in the toilet and waking up with a headache, hey, that’d be awesome.
Having T1D is like driving a car: You always need to have one eye on the road all the time, while you constantly make micro-adjustments to the wheel, tilting slightly left and right, because if you don’t… fweeeee! You fly off the highway.
Speaking of cars, the difference between individuals with T1D is like seeing people have conversations comparing gas mileage. The first person says, “my car gets 50 miles a gallon,” and the other guy says, “mine only gets 15 miles per gallon! What’s your secret!?” And the first guy then goes off on a lecture describing what kind of gas he uses, how often he changes his oil, and that he always drives within the speed limit. Meanwhile, the second guy rolls his eyes and looks around the room to see if anyone else is bored.
When it comes to the two different cars differences in gas mileage is that one car is a Hummer and the other is a Prius. They’re both cars, but they’re also just made differently. Stop talking about how you take care of the car — it has no impact on why the two cars are different.
T1Ds shouldn’t compare themselves to one another in a similar fashion — we’re all unique. Learning not to do that is why it takes so long to learn what your engine really requires.
Now, one could say that there are similarities between cars. After all, Hummers are the same, as are all Priuses. But unlike cars, which are fixed machines, humans are biological creatures, so our systems adapt, and will do so in endless ways, depending on different conditions. This is how we survived feasts and famines in evolution. Our metabolic rates rise and fall depending on so many genetic and environmental factors, that the variability between individuals, and in your own body, is too great to have a simple treatment plan.
In short, managing your T1D requires more than just taking insulin and eating the right foods; you also have to exercise well, sleep properly, and take care of many other aspects of health beyond just diabetes, and (ideally) understand how and why each of those things affects glucose levels. Sound hard? It is! But it is also achievable.
So, how do you actually learn how to adapt to T1D? Oddly, you can’t do it in one fell swoop. You have to live with the disease and see how your body reacts to the actions you take. This experience comes in three distinct phases, just like my joke about going to college.
Stage 1 is when you rely 100% on your docs for knowledge and instruction because you don’t know anything else. You’re like a freshman in college. Simple things first: Food causes your blood sugar to rise, and insulin brings it back down. Easy, peasy, right? When you do well, doctors reward you with compliments. But when you do poorly, they give you a stern look of disapproval and make you sit in a corner for fifteen minutes, because that’s as long of an appointment your insurance company will pay for.
As time passes and you realize that all the advice you’ve been given doesn’t always work. It seems that your blood sugar can rise from other sources too — your own liver creates it, cortisol (from stress of lack of sleep), sickness and other forms of inflammatory response, and many more things. Moreover, you can suffer “insulin resistance,” which means that the insulin you take doesn’t actually reach the cells they’re supposed to.
As for bringing blood sugar levels down, insulin isn’t the only thing that will do that. Exercise, certain metabolic conditions, some medications, and other factors can also siphon glucose from your bloodstream without insulin. Unless you know these things, and know how to spot them and prepare for them, your blood sugar levels will drop too low, and then you have real problems ahead of you.
You can imagine that no recently diagnosed diabetic can possibly learn these things right away. In fact, many doctors themselves don’t really know how these systems work either, because these processes are highly complex, and they’re not consistent from one person to the next. So again, doctors don’t really teach you that stuff. You almost need your own medical degree to fully understand it. But of course, you don’t know that — yet — and your doctors don’t tell you, which is highly frustrating.
Remember, we’re still in Stage 1 of T1D — you don’t know anything more than what your doctors tells you, which is very basic and minimal. During this period, you’re using incomplete (and often incorrect or oversimplified explanations) to try to manage your T1D. As the frustration grows, you switch doctors, only to run into the same experience over and over. In fact, most T1Ds switch doctors an average of 5–6 times during their first ten years of having T1D, because they keep getting frustrated that their doctors are not helping the way the patients expect.
And yet… Despite the anxiety, there are those that do pay a bit closer attention to what’s actually happening to themselves. Through trial and error, and sometimes reading research journals and other scientific literature, you begin to pick up on these nuances that your doctors never told you about. This is when you graduate from Stage 1 and proceed to …
Stage 2: The awareness that your medical care team (and other experts) don’t know as much as you expected of them, and you begin to act more autonomously, making your own decisions, and not having to clear everything with your doctor ahead of time. You realize you’re a one-person research lab: You get to play doctor on yourself! You have 24/7 access to a real diabetic patient (you) upon whom you can conduct your own studies on exercise, more efficient insulin dosing patterns, and food selections, all to see what actually works and what doesn’t for you.
As you become better at managing yourself, you come to terms with the fact that it’s just not possible to be perfect. You do the best you can, but try not to get depressed when the target keeps moving around. T1D may be difficult, but it is manageable.
Some people never get to Stage 2, and others remain in Stage 2 for a very long time. But at some point, there are those who graduate to …
Stage 3: acceptance. The fact that you understand the level of attention and self-discipline required to do those things you need to do, and understanding why you do them, is what gets you to ideal T1D control.
While the science and biology of the human body do follow patterns, the bell curve of “normal” is so wide and deep and broad, there really isn’t a normal type 1 diabetic. There’s you and only you, and no one knows you better than you. This is when you’ve got your PhD in T1D self-management.
As you read this, I can see what you’re thinking next: “Decades? Really? No! I want to go through those three phases really fast by getting a quick crash course in T1D.”
That’s an excellent attitude, but experience takes time and repetition to really, fully grasp. What worked once may not work again. And then suddenly it works again. It’s especially difficult when you’re young because your body changes, your metabolic system goes through different periods of growth and recession. This evolutionary process can’t be rushed; they come at the pace of life. You can’t rush the biology of life. Just like the old joke goes: “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 life, you can increase the amount of stuff you learn during that time, akin to what Plato said about knowledge: “The more you know, the more you know you don’t know.” As it applies to self-managing T1D, you may have reached a psychological plateau of acceptance and have overcome the mental stresses of living with it, the learning isn’t over, and never will be.
So your post-doctoral work is learning how to triage information. Whenever you hear or read about something new, you learn how to separate it into one of three buckets: useless, useful, and essential. This is how you get healthier.
Learning to triage new information starts with the first rule of triage:
“The more confident anyone is about anything they recommend about T1D, the more likely they are wrong.”
Read that carefully: When someone insists that something is universally true — such as what diets work best, or whether you should use an insulin pump — it’s never, ever that simple. There are exceedingly few generalized truisms that apply to all T1Ds because (sing along with me now), everyone’s metabolism is different. Just keep remembering that.
Or not, because one way or another, life’s experiences will teach you that.
Lastly, the final bit of information you should be aware of is that living with T1D can be awfully depressing, so mental health is the most critical thing to manage. If you’re not psychologically well, you can’t manage the diseases. Best to laugh a lot. Be around fun and funny people.
The secret to keeping mental acuity 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 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. It’s a bunch of chemicals swimming around in your body. 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, and this is essential to maintaining mental health. 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!
Now that you’ve got a handle on all this, let’s walk through your life as you go through the three stages and look for each of those lessons we reviewed. Trust me, this will be fun.
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: Insulin brings your blood sugar down. That, and don’t eat. Unless you have to. And if you have to, do this and not that.
“T1D is basically that simple,” they tell you: “It’s all about balancing your food intake with your insulin dosing. As long as they 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 and however everyone is different was just to scare me,” you think to yourself.
After listening diligently and taking notes during your 45-minute training session, 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 need to calculate how much insulin you take. They tell you, “Just read the labels on the food packaging.”
Again, easy! So you give it a try: “I’m going to eat this Snickers bar and that bag of Doritos, which the package says contains 30g carbohydrates, and … WAIT! Hey! Don’t take that away from me! I was going to eat that! Give it back!”
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Ok, fine, you say to yourself. So, later that week, you go to a restaurant with a friend and you compare the items on the menu with your notebook of foods and carbohydrates at the ready. You place an order, but 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 tell your confused dinner companion that you’re now a “diabetic,” to which your friend eagerly explains how their grandfather is too! “But he doesn’t have to take insulin,” they say, to which you reply, “No, not that kind of diabetic. It’s different. I don’t know how, exactly, but they tell me it is.”
Your friend perks up and says, “Oh! I heard of that! I think there’s a cure for that, you just have to eat a lot of…”, at which point you quickly interrupt: “cinnamon?” Your friend nods affirmatively, “Did you try it?” You reply somewhat robotically, “They told me to expect a lot of people to tell me that, and not to believe them. They also told me to keep a distance from such people…”
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 profession, regardless of your astrological sign. Must be able to lift a limp body at a moment’s notice.”
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 only have 15 minutes, so you hurry. It takes you 14 minutes and 30 seconds to go through all the notes and questions, to which your doctor 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.
So, you go to the pharmacy to fill the prescription, but they tell you that your insurance company won’t cover it without a “prior authorization,” which must also be accompanied by a note confirming you were excused from nutrition class.
You then have to call the doctor’s office, where the assistant sounds surprised that a preauthorization is required (sigh), which they could have easily done by phoning it into the insurance company first. Instead, they chose to “fax” it in, which anyone younger than 40 doesn’t even know what that is. Ok, so let me explain.
A fax machine is required by the FDA for certain kinds of authorizations, where one must use really huge printer-like devices that transmit banal information over “telephone lines,“’” which were used in the early 20th century for communications. (Your grandparents used these to login to AOL in order to see their spam emails.) So now, the fax machine would …
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 evaluates the new insulin using the latest clinical trial data, which they use to justify sending 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. Fortunately, you eventually learn you were never talking to the insurance company, but a customer service rep from the cable TV provider. 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, along with a recommendation to try eating cinnamon.
You now understand why scientists don’t want to pursue careers as clinicians.
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 on Facebook with whom you 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. Your next HbA1c test comes in at 8.0%, but you have absolutely no idea what that is.
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 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 his 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 replies 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. That it’s so much work. And expressing this sentiment 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, so long as you want to live beyond the age of 50, that is. One needs to be ready to take action at any time to avert a crisis that could easily be right around the corner.
Managing T1D comes the scary reality: It accounts for over half of those who contract kidney disease, and have retinopathy, an eye condition that causes 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.
It’s scary, but you get an idea from a friend that heard a podcast about metabolic health that recommended reading articles in medical journals instead of relying solely on doctors and social networks for advice and ideas. You learn about the basic mechanics of the metabolism, and realize that even non-diabetics have a hard time keeping healthy for similar reasons.
While you definitely feel more informed, piecing it all together is not easy, and the frustrations of daily management continue to mount: the unexpected highs and lows, the sleepless nights, and the mounting blood pressure. The worst part is, you just can’t escape this thing — there’s no way out.
But you see there’s a turning point when 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, 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 so is the metabolism, which you read in a science journal.
You comment that you can no longer look at things overly simplistically: T1D is not just about carbohydrates and insulin; you also have to look at your blood sugar level trend: What direction it’s going, and where would it be in an hour if you did nothing? How fast is it rising or falling? Did you exercise today, or will you later? All that matters in your dosing decision too. Doctors can’t necessarily tell you what to do, because it’s so dependent on any given day.
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.
Now that you are so much better at it, you can 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 to someone, 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: You’re relying on yourself more than your doctors.
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 joining her in 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.
After you pause and think back fondly about the great talks you and Carol used to share, you click the unfriend button.
Alas, you have a new lease on life. You switch doctors — a few more times —looking for that special M.D. that can talk to you at a more mature level, like you’re not the idiot that most of his other patients are.
You also expand your network beyond just social media by attending conferences, and even dipping 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 in T1D, 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 just 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 to relax.
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 this new doc, 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. Just like all the others. 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 she stopped replying to your emails, but you’re interrupted by the nurse who 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 that, while she was talking to you, the doctor snuck out without you noticing! the nurse was just a decoy!
Damn, this endo is good. Must have gone to Harvard.
You begin to suspect you’re on a blacklist shared among endocrinologists about patients who “know too much.” They email each other to share ideas on ways to avoid overly-informed patients. “Get your PA to barge in and ask about insurance,” is a common technique.
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 do the trick.
You talk to other T1Ds that seem to be under tight control. One recommends the book by Dr. Bernstein on the low-carb diet, but you find that most researchers say low-carb diets only works for a very small number of people, and while they do achieve tight glucose control, they tend to suffer from other problems due to lack of exercise, which is largely due to not having sufficient energy because they don’t consume enough carbs. You get all this from a meta-analysis paper titled, Low-Carb and Ketogenic Diets in Type 1 and Type 2 Diabetes.
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 by not adhering to the low-carb rule that all T1Ds should follow.
You meet another guy that 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 untested nutrition supplements.
“Doctors… in it for the profit!”, you think to yourself. “I’m shocked, shocked, that there’s gambling going on here!”
You ultimately see the pattern: People who find something that works for them becomes adamant that it’s a solution that works for all diabetics because “we’re all basically the same animal.”
You’re now adrift in the T1D universe, looking for someone — anyone — that can talk to you at your level and that isn’t a complete idiot.
You finally resign yourself to approaching Linda at work to ask her how she managed to achieve an A1c of 5.9%. She always seemed overly eager to help, but somehow seems a bit “off.” You’re now desperate. 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, mostly in the form of carrots and steamed veggies. I 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 uncomfortably close to you 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. And that thing about small furry animals? Ick.
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 the really loud coffee-making machine, which also takes a long time, 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. Moving on.
You and Larry finally get your table, and he brings up the app for his insulin pump and starts to calculate his dose — it takes him forever, but he tells you that unless you do it the way he does it, you’re going to die. Young.
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 online dating.
[ Editor’s Note: The author inserted a long diatribe about online dating, 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 the 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. 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 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. The other political party. They’re ruining America, you know.
Anyway, you can’t necessarily copy what other T1Ds 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. the important thing is, It’s not their fault!
Such a uniquely individualized disease cannot possibly be managed by someone that doesn’t live with you 100% of the time. Even endos that are themselves also T1Ds aren’t great at managing their own disease (you learn in a medical journal). You held onto this fallacy that endos are these great, wise, oracles of knowledge, where you need their approval for everything you do. 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 haven’t graduated — you’re just in the program now. You are independent. Sure, you still need your doctors, of course — you always will. They write prescriptions, after all. And yes, they are helpful, but you have to work with them wisely. You were 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. They’re not surgeons , where you rely on them to perform tasks that you cannot possibly do on your own — they’re more like advisors. 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.
You also realize that being a doctor is not easy. 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 to pass: an older woman in a wheelchair with an IV hooked up to her arm. Your doctor follows her out, and says something inaudible in her ear, and it lights up her face. The woman’s assistant gives you a friendly smile as they roll past you. You enter the exam room, 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,” your doc says. “She’s had type 1 diabetes since 1963. Amazing lady.”
In the exam room, you sense a new awareness, not just of yourself but that of your doctor. It’s a nice, comfortable, bi-directional communication between you two. You know yourself well enough to do the right thing, and your doctor adds ideas as well. 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 to see you.
As you think about it, you also forgive him for your prior admonitions of other docs you’ve had. That they never really spent time with you. Maybe they knew they just didn’t need to. Maybe they knew you were going to be fine on your own. Maybe they didn’t need to give you what you thought you needed from them.
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 everyone — 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. You couldn’t possibly do any of this as a teenager, or perhaps even in college. It takes time.
Then your doc suggests using an insulin pump, and you respond by citing a research study by the T1D exchange, which finds that “there isn’t a substantial difference between A1c outcomes for those who manually take insulin injections compared to those who use pumps,” including closed-loop insulin pumps, which are supposed to be the next big thing. You show him a graph from the study’s findings.
You point out that, Children and young adults do better with pumps because they have no idea how to manage their disease. But by comparison, their A1c levels are still over 8%, far higher than the 7% target for avoiding long-term complications. But of adults over the age of 26, where people are more familiar with their disease and are proactive about self-management, they do better with multiple daily injections (MDI) because they are willing to pay closer attention to their disease. 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, your endo acknowledges that study, and says that many of his patients also don’t like pumps.
“So why did you ask?”, you reply. “Why propose something that probably won’t improve health?”
He replies with a comment you didn’t initially expect, but can also appreciate: “Well, many find them just more convenient, and getting patients to do anything is very, very hard.”
And that’s when you realize it’s just not worth arguing about it anymore. You are in great control, but because you are, you’re the unusual diabetic that doctors aren’t used to dealing with. For everyone else, they have to try to persuade in so many different ways to take better care of themselves, so they’re in a pattern. Recommend the same things, over and over, to everyone, because that just makes things easier. That you’re different, well, it’s just not worth blaming them if they don’t see it. You have better things to do.
It reminds me of a joke in the Woody Allen movie, “Annie Hall,” where Woody’s character explains his perspective on relationships:
“A guy walks into a psychiatrist's office and says, hey doc, my brother's crazy! He thinks he's a chicken. Then the doc says, why don't you turn him in? Then the guy says, I would but I need the eggs. I guess that's how I feel about relationships. They're totally crazy, irrational, and absurd, but we keep going through it because we need the eggs.”
That’s how you look at your relationship with your doctors: All the crazy, irrational and absurd assumptions they have about you — all of which wouldn’t be necessary if they’d just look at how well you’re doing — are not worth fighting about. And yet, you keep going back because, well, you need the prescriptions.
As you leave, you shake hands in a new way, unlike any before. There seemed to be a new kind of relationship. One with mutual understanding. Mutual respect.
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.
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 in the distance. You’ve seen it when the sun is shining, and when it was cloudy and grey, and when the snow made it almost invisible. And despite all that, you realize it’s just a river, indifferent to the weather, the sun, the temperature, or even you. It just is what it is.
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.
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 in managing Type 1 Diabetes.
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