One thing I’m super open about is my diabetes. I have been type 1 diabetic for over 23 years, and with all of the ways it has affected my life, it does me no good to hide it. Moreover, I feel a responsibility to educate people about what my life is really like, should they feel inclined to ask or, if they’re less fortunate, make comments out of ignorance.
Over the years, what has struck me over and over is how little people actually learned in high school biology. Heck, I’ve even caught people with college degrees (and even some–ahem!–nurses) asking questions that tend to defy logic and modern biology. We need to start with a quick note on the biology of diabetes.
There are two major “types” of diabetes (with other minor types, like “gestational diabetes”) that everyone needs to be aware of. Type 1 diabetes (commonly called “juvenile-onset” or “insulin-dependent”) can occur in people of all ages, but true to stereotype, usually occurs in people still in their developmental years. I was diagnosed at the junction of ages 10 and 11. However, I know people who were diagnosed in their 20s, 40s, 50s, as well as kids who were only a year old upon diagnosis. It is a true autoimmune disease, with no single known cause (although many theories abound), and a certain genetic component. What truly distinguishes Type 1 diabetics is that their bodies “attack” their own pancreatic beta insulin-producing cells and shut down production. Untreated, this allows glucose to build up in the body and overload the bloodstream. This overload of glucose strains almost all major body organs, and leads to a toxic state called “ketoacidosis” in which the body begins to burn proteins and fats since the cells can’t get ahold of the glucose floating in the bloodstream. Rapid weight loss, extreme thirst, mood changes, fatigue, and frequent urination are all common symptoms. If left undetected and untreated, type 1 will lead to death (the amount of time before death is debatable–ketoacidosis sets in within about 4 hours in a diabetic who does not receive insulin, and estimates of time to death are only a few days to weeks, but for people who are not yet diagnosed, and their bodies may produce their last spattering bursts of insulin, a person may live a few months to a year untreated–this is likely highly variable and something physicians could comment on). Treatment always requires injected insulin. Period.
Type 2 diabetes, aka “adult-onset diabetes” or “non-insulin-dependent” or “lifestyle” diabetes, on the other hand, is not a disease in which the body attacks its own cells and shuts down production in a short time period. Rather, the body is producing insulin but either cannot keep up with the body’s demand for more, or the body isn’t able to effectively use the insulin it is producing. This type of diabetes can occur in people of all ages, and indeed, with our current culture of obesity, is becoming almost common in children. This type of diabetes is considered to be “caused” be a sedentary lifestyle and is often accompanied by a poor diet. Meaning? You often see this type of diabetes occurring in people who are overweight and inactive. However, there is also a genetic component, shown most strongly in studies showing higher rates of the disease within certain races or ethnicities. Untreated, type 2 diabetes also is characterized by a build-up of glucose in the bloodstream, although it is not usually quite as drastic as in type 1, and ketoacidosis is a less likely outcome. Symptoms include thirst, fatigue, and frequent urination. Unlike type 1, individuals often live for years without knowing they have diabetes and are more likely to die from a complication caused by having elevated glucose levels long-term (heart attacks, stroke, ulcers from poor circulation, kidney damage, etc.). This disease, while serious, remains less catastrophic than type 1 because the body still does produce at least some insulin, which keeps the body from having grave ramifications on an immediate basis. Treatments can range from “simply” losing weight and keeping a strict diet, to taking oral medications, to taking medications plus insulin, to the newest “cure” of gastric bypass which is a bit beyond my comprehension (see footnote 1). Treatment is often progressive as the disease deteriorates over time.
With that biology background, I respond to my top pet peeves that yes, can tick me off in a heartbeat, but more importantly, I hope these responses can help others make sense of the condition and have more productive conversations about the ways diabetes affects a person’s life and the burden of the disease. Read on before you ask the next diabetic your burning questions.
- Diabetes is not necessarily caused by eating sugar!
- “Did you get diabetes because you ate too much sugar?” Referring to the above explanation, Type 1 diabetes is caused by the body attack its own insulin-producing cells. Type 2 diabetes is caused by LONG-TERM inactivity levels and/or overtaxing the body’s resources with poor diet in general (i.e., high fat, high sugar, high processed foods, low vegetables, etc, etc) COMBINED with genetic predisposition (everyone knows that lucky shit that eats whatever the hell he or she wants and abuses the body royally and never has a care in the world). Every person on the planet eats “sugar.” A fancy word for sugar is “carbohydrate.” Once ingested, all carbohydrates eventually break down to glucose, the molecule the body uses for energy. (Remember high school biology?!) Ergo, you can’t survive without carbohydrates because your body needs glucose in order to function. Rice, pasta, bread, milk, fruit, legumes, and tons of other foodstuffs all contain carbohydrates. Every balanced and healthy diet contains some carbohydrates. But even so, there are people that will eat Twinkies, Twizzlers, and Oreos every darn day and never develop diabetes. So guess what? No diabetic wants to hear that you assume it’s his or her “fault” that they’re sick because they ate sugar. Classic case of blaming the victim, although I understand most of it is done innocently.
- Good questions to ask a diabetic here to spark conversation and learn more would be, “Does anyone know what causes diabetes?” or “Did a doctor ever give an explanation for what caused your diabetes?”
- Food raises your blood sugar, insulin lowers it.
- ”So if your blood sugar is low, you need insulin?” Again, people, back to HIGH SCHOOL biology. Let’s revisit what insulin does–its one function, its reason for existing. Insulin is a hormone that binds to your cell wall and allows molecules of glucose (broken down from the food you eat into glucose in the stomach) to pass through it from the bloodstream into the cell. Once in the cell, the mitochondria go to work on the molecule of glucose, converting it into energy you can use. If insulin doesn’t exist, your glucose cannot get into the cells for use and backs up in the bloodstream. Conversely, if your bloodstream doesn’t have a certain amount of glucose and you have too much insulin relative to the amount of glucose present in the bloodstream, you also have a problem with homeostasis. In other words, your bloodstream needs a certain amount of glucose at all times (technically, this equates to roughly 70-100 mg/dL), and the insulin in your body needs to balance the glucose available to take only a certain amount and give it over to your cells. In a type 1 diabetic, this process is completely broken. Not only do we need external insulin to survive, but we have to constantly maintain our own homeostasis through constant fingerpricks to assess bloodstream glucose levels. So, if my blood glucose is LOW (meaning less than 70 mg/dL), I do NOT need insulin (that could kill me!), I need FOOD. Think through the biology. Revisit this concept until you have it. See footnote 2 for a solid, easy-to-understand video. Don’t remain ignorant of this concept! If you ever come across a diabetic suffering from low blood glucose who is unresponsive or seizing, and you give him or her insulin, you may mean well, but that could be life-ending for that person. While high blood glucose will kill you in the long-term (over months, years, or decades), blood glucose that is dangerously low can kill you in minutes. Ironically, a diabetic who is being treated with insulin or other drugs can just as easily die from LOW blood sugar as high. So, after you’ve got the idea that low blood sugar requires food, not insulin, then think through the opposite: if blood glucose is too high, insulin (or oral meds for type 2) is needed, not food. This is the “typical” problem with diabetes and in that, without insulin or meds, blood glucose would always be too high.
- A good question to ask a person with diabetes would be, “What are the symptoms of low and high blood sugar and how could I help you in each scenario?”
- Diabetics need to eat a varied diet, including “sugar.”
- ”So you can’t eat sugar, right?” WRONG! Good Lord, please please please pay attention in biology class. Please refer to the passage above about how almost all foods (except raw animal meat with no sauces) contain carbohydrates that break down to glucose. If what you mean is I’m not supposed to eat cakes and candies, that is closer to the truth, but guess what?! NEITHER ARE YOU, SO GET OFF YOUR HIGH HORSE. Processed sugar is good for no one, but something most everyone eats at some point. I, for one, eat processed sugar (chocolate chip cookies, mostly), on special occasions and I give myself more insulin to compensate for the influx of more sugar (remember the concept of homeostasis). I also NEED sugar, and the faster acting the better, when my blood glucose is low. Fruit juice, soda, hard candies, sugar packets, or quick dissolving candies are all good options to raise blood glucose back up to a normal level quickly. I don’t mind correcting people who think this, but it sure does shock me how little pay attention to something as important as everyday nutrition and biology of digestion.
- If you’re not sure what a person with diabetes can eat (and recognize that the answer may change at any given moment), just ASK THEM, don’t assume. “Would you like a piece of cake today?” “Would you prefer fruit for dessert?” Better: “Would you prefer if WE ate fruit for dessert together so we could both be healthier?” Novel concept.
- Some people have diabetes “really bad.”
- “Oh you have diabetes? My grandma has that, but not really bad–my best friend’s little sister’s friend has it really bad. I think he needs like, shots and stuff.” Sigh. Either you have diabetes or you don’t. Many people say this without having any idea what they even mean by it. To me, I might interpret that they mean to say the person has type 1 instead of type 2 and has to take insulin, but to someone else, it just may mean that the type 2 diabetes has progressed to the point where insulin injections are needed. To a physician, it may simply mean that the person doesn’t check his or her blood glucose and doesn’t take insulin or meds as directed and therefore is not compliant with medical best practice and is risking any number of possible bad outcomes like blindness, nerve damage in the hands, feet, eyes, or kidneys, ulcers that won’t heal, cardiac problems, etc. My great-grandfather had type 2 diabetes before they really knew what it was and how to treat it. In his last years, his glucose was so elevated that when he used the restroom, he couldn’t see the toilet well enough to aim into it properly, and his urine found on the floor was the consistency of jelly. THAT, is undoubtedly, “really bad” diabetes, but it was only bad because he either did not know how to care for himself, or disregarded sound medical advice about how to do so. So in order to have diabetes “less bad”, you need to take care of yourself. Now, please note that EVERY diabetic has good days and bad days, even if he or she takes impeccable care of him/herself. There are so many degrees of health, and heck, some of it is just luck, or “factor X” as one doctor of mine called it.
- To have a good conversation, you need to ask a person, “how are you feeling today?” just like you might a person without diabetes. Another good question is, “What kinds of things help you control your blood sugar? / What sends your blood sugar out of whack?” Not “how’s your diabetes going?” because gosh I can’t tell you how to answer that question honestly in a succinct sentence. So you’re going to get a very dumb or a very abbreviated answer.
- You can still be healthy with diabetes and live well.
- “You look too healthy to have diabetes.” Gee, thanks. And just what should I look like? Should I bleed from my right ear and drool? Should I drag my left foot for greater effect? Should I be hooked up to dialysis? Jeepers. I don’t know about you, but to me, living well is just as important as living. It was made clear to me very early on that diabetes was my number one job. My most important responsibility was to take care of my body. Having a high fiber, low-fat, low-ish carbohydrate diet (preferably organic, preferably full of fish, blah blah blah); exercising daily; educating myself on how to control my disease; getting my flu shots; doing multiple blood tests and insulin injections as needed; learning to interpret my body’s signs and symptoms—all of these things were my job, my life. If I neglected these things, I might live, but I would suffer possible complications at a young age. These complications could compromise my vision, my ability to have children, my energy, my kidney function, my moods, and my ability to function on my own. Um, no. If my choices are living well, living like crap and hating life, or dying, I’m going to choose the first one. I imagine most rational people would. Again, in order to “look healthy”, you need to BE HEALTHY. Even if you’re not diabetic. Duh.
- Good questions to ask, “What kinds of things do you do to maintain your health while living with diabetes?”
- Getting diabetes as an adult is not worse than getting it as a kid.
- ”It stinks to get a disease in middle age–better to never know any differently,” or “You turn 40 (or 50, or 60) and your body goes to pot–if you’re a kid you learn to deal with it like second-nature,” or “I wasn’t supposed to get diabetes at this age.” I can’t tell you the number of times I’ve heard these or similar sentiments. What I can’t quite figure out is why. The closest I can surmise is that people assume it’s difficult to be diagnosed with something as an older person because it requires the person to do that dreadful thing–CHANGE. However, if you stop to think about this for two seconds, you realize how offensive this is to pretty much everyone. First of all, MOST people getting diagnosed with diabetes in middle age are getting diagnosed with type 2, which, annoying as that is, is far less dangerous and deadly than type 1. In addition, as I said, I know people who were a year old when diagnosed with diabetes. At that point, the parent must inject an infant with insulin and check blood sugar via fingerstick multiple times a day, then sometimes force feed the kid a certain amount after administering the drug or if blood glucose is low. Imagine! The poor kid can’t communicate, the kid feels pain, the kid feels tortured, but can’t understand that the parents are working in his best interest. Or think of the teenager–just at the time his or her peers are growing into independence and learning to drive and hang out at pizza joints, a teenager with diabetes is ostracized from certain food-centered social activities (tough to take part in birthday cupcakes, pizza after school, learning to drive if blood glucose isn’t stabilized, sports activities without multiple blood tests) all while having the usual strain of being a teenager. Then, to top it all off, by the time they reach middle age (if they do), they’ve got a body that has been battered by decades of a disease, versus the person newly diagnosed in middle age whose body has served him or her well for decades. Note to people in middle age who are diagnosed with either type 1 or 2 diabetes: it’s not your body’s fault that you never properly appreciated its ability to function normally for most of your life. Maybe now you’ll think about it. Finally, CHANGE is something required of ANYONE facing a new disease diagnosis. I don’t care if it means changing the way you eat, cook, walk, run, the medicine you have to remember, or what. ANY chronic disease requires long-term change, and it is no harder for an adult to change than a child. (This reminds me of a side argument about how people claim it’s harder to learn language as an adult than as a child. Um, I could go on for ages about how that is pure bollocks, but: another day, another post.) The adult was simply spoiled for longer than the child. So sympathy for people who are newly diagnosed in middle age with a chronic disease, while correct and good, should not push aside the sympathy you should feel for people who have lived with the same disease since childhood. I can tell you now that diabetes will NEVER feel “easy” or “second-nature” or “like something I don’t know how to live without.” Given the option, I’d drop this deadweight sucker today and not look back. So if you do not have a chronic illness, take a moment and thank a higher power for your luck and your parents for amazing genetics.
- Good questions to ask diabetics of all ages might be, “How does diabetes change your daily life?”, “What kinds of things have you had to change since being diagnosed with diabetes?”, and “What is the hardest thing about having diabetes?”
- You could do it too.
- Some phrases I heard growing up were “I could never give myself a shot” (from friends); “If I could just take it away from you and have it myself I would” (from my grandmother); “I admire you, I could never be so vigilant” (from random people on the bus). Bullshit. I did not choose this disease, I would not choose this disease, and giving myself a shot is not, from my view, a choice. Unless you feel suicidal. If your choice is death, there’s more wrong than just diabetes. To my grandmother, thanks for your sentiment, I appreciate the source, but jeesh, you wouldn’t know what to do with diabetes if it smacked you across the face. So again, be grateful and move on.
- If you feel the need to make a comment, simply say, “What a difficult disease to face. I admire your courage.”
- Diabetes is not “better” or “worse” than other diseases.
- “At least you don’t have cancer.” Ah, the cancer card. Really sucks the response right out of me. Except that it leaves me raging inside. Don’t get me wrong. Cancer is awful, especially tragic in kids and people who have lived healthy lives to the best of their ability. But there’s a couple of pain points I have with comparing my diabetes to cancer. First of all, all diseases suck. God didn’t mean to make some bad things more bad than others. It’s all bad. But comments comparing me to people with cancer do cause me to think about things like: You can prevent cancer by not smoking. You can eat well. You can (within reason) avoid many carcinogens like not breathing in Clorox. Beyond this, there’s the fact that sometimes, cancer is curable. And that makes it a game you can (hopefully, eventually) stop playing. You don’t get off the diabetes train five years from now, there is no remission. Not if you’re type 1 and usually not if you’re type 2. Oftentimes, I find my brain thinking, cancer is diagnosed in the aged. Sometimes cancer is the first disease seen by people well after middle age. This does not make it any “better” or “easier”, it just is a reminder to APPRECIATE your body for every day of health you have if you’ve made it that long without problems. Finally, if cancer is terminal, the romantic in me says it is a chance to say goodbye (this is terrible, I know—don’t hate, I’m being honest about what I really think about as a reaction to insult). This is tragic, but also an opportunity to write your own destiny of who you want to talk to before you go and what you want to say. You may even decide to completely change your life at its end to meet your dreams—living by the beach. When you have diabetes, you’d better be at work tomorrow, and if you’re not, don’t you dare tell anyone that you somehow lost control of your blood glucose for twenty-four hours—“you’re too smart for that.” I don’t want to think like this; it is just a guttural response when I feel insulted, like my disease is less consequential than Sally’s. Every disease is a burden and has a burden. Don’t pit them against each other. There is enough empathy in the world to go around.
- If you feel that a diabetic is being melodramatic, first of all, shame on you. Second of all, keep your comments to yourself. If your empathy is just so low that you feel you have to sling a slight toward the offending diabetic, please seek therapy for whatever complex you’re suffering from.
If you’ve gotten this far, congratulations! You’ll now be ready to handle your first full-fledged conversation with Caroline-the-diabetic. In addition, I think these tips could apply to anyone looking to understand more about any illness. In case you’re curious, in the time it took me to write this post, my blood sugar was high 14 times and low twice. Now enjoy your Halloween candy!