Misconceptions and assumptions are rampant, and almost killed me.
November is National Diabetes Month, which means it’s a good time to cut through the jokes (“Just looking at that cake is gonna give me the diabetuss har har”) and the misinformation (“Cinnamon and turmeric can cure you!”) and talk about what it actually is.
As a type 1 diabetic (also known as “juvenile diabetes,” which is a potentially dangerous misnomer ), I’ll going to focus on that and the things I find myself repeating over and over to people who don’t understand this disease but think they do.
- It’s an autoimmune disease. That’s right! Something goes haywire in a type 1’s body, and beta cells in the pancreas are attacked from within. As cells die off, the pancreas can’t do its job: i.e. make insulin. What does insulin do? It carries the energy (aka glucose) made from food out of the bloodstream and into the muscles and organs and systems that use that energy to keep you alive.
- You can get it at any age. Once commonly referred to as “juvenile diabetes” because it’s most often diagnosed in children and young adults, type 1 can actually come on at any age. In fact, one in five people diagnosed with type 1 are in their 40s when it develops.
- You can get it gradually or all at once. Some people have a dramatic diagnosis story. Their pancreatic cells are aggressively attacked and killed off, they stop being able to produce insulin, and they quickly get very, very sick. Other people, like me, experience a more gradual onset that looks a lot like type 2 at first. Sometimes this type is known as LADA–latent autoimmune diabetes in adults.
- It can be misdiagnosed. Speaking of LADA and other later-life onsets of type 1, it’s not uncommon to be initially misdiagnosed as type 2, especially if you’re overweight. As we know, weight stigma exists among medical professionals. If you go to the doctor with a problem and you also happen to be fat, there’s a good chance your doc will turn off her curiosity and look for a way to blame your fat body. This is what happened to me.
- A misdiagnosis can kill you. Armed with my type 2 diagnosis, a Metformin prescription, and some vague advice from my doctor, I proceeded to be the best little type 2 I could. I cut carbs and exercised like a good little soldier. And I lost weight. A lot of weight. Pretty fast! Hey, this is awesome, thought I. In the first five or six months of this, my numbers looked great. And then I just kept losing. And getting horrible cramps in my legs and feet at night. And still getting up 4–5 times in the night to pee even though my blood sugar was in a decent range. Long story short, I was in a dangerous situation. If I hadn’t accidentally learned about LADA while scouring a diabetes message board for clues as to what was wrong with me, I might have just carried on until hospitalized with DKA, which could have killed me–as it did two people I know in a similar boat.
- A type 1 can be any weight. After I got the right dx through a test for GAD antibodies, I went around screeching this to every doctor and nurse I knew. There’s a misconception that “type 2 diabetics are fat and type 1 diabetics are thin.” That sentence needs a heavy dose of “may tend to be” because it’s simply not true. The assumption is so infuriating, for so many reasons. Not only because it caused my misdiagnosis and almost killed me, but because the “you gave this to yourself by being fat” thinking is not only medically not factual, it’s a horrible way to go around thinking about yourself or others. If you see someone out in the world with an insulin pump or glucose monitor or injecting before a meal, I suggest holding off on your assumptions and judgments, and minding your business.
- It can run in families, but it doesn’t have to. While there can be genetic factors in terms of your likelihood of developing type 1, there can also be environmental triggers. To my knowledge, I’m the only person in my family tree with this disease. What triggered it for me? I have some theories: the whole “adverse childhood events” and disease thing as a person with multiple ACEs; a virus; possibly my body going haywire after using insertable birth control, which I did the year I developed symptoms. The fact is, I’ll never know. (Also, there is actually a stronger genetic link with type 2 than type 1.)
- Cinnamon, turmeric, essential oils, juicing … just, no. Stop. Thanks to the media’s extremely oversimplified narrative about “diabetes,” without specifying the type or confronting any of the other aforementioned assumptions, there are a lot of people out there who think they’re experts. They read an article or saw a headline or watched a documentary, and now they have the cure and are eager to tell you all about it. The most reliable experts on any disease are the people who live with it every day, so resist that temptation to share.
- It is not cured or even managed by a low-carb diet. Sorry, keto evangelists! I can understand why conventional wisdom might make you go, well, why don’t diabetics just not eat carbs? Then you won’t have glucose in your bloodstream to worry about, right? Wrong. The body is a wonderful and amazing system. Certain systems and organs (like, um, the brain) can only run on glucose, so to make sure you’re getting a baseline amount of that life-giving fuel into the ol’ brain, the body can turn about half the protein you eat and even some of the fat into glucose through a process called gluconeogenesis. And the body requires insulin to process that glucose, so a type 1 (whose pancreas can’t make insulin) must inject it, even on a low carb diet.
- In fact, there is no single “diabetic diet.” Some type 1s do well on a low-carb diet, while others find it increases insulin resistance over time or creates new problems. Some do great on a low-fat, high-carb plant-based diet; others find that overcomplicates their management and puts them on a blood sugar roller coaster. Each person’s management is unique to their lifestyle and preferences, and can also change over time. Some like the language of “I can’t eat that” to simplify their choices; others of us hate that language and say “I can eat anything,” instead. I’d venture to say that all of us hate anyone saying “you can’t eat that” to us.
- It’s real serious. Because it’s a mostly self-managed disease and type 1s are out there doing everything and living their lives, people can forget it’s serious. Type 1 diabetes is an acute and potentially fatal disease with no cure. I carry the power of my life and death in my insulin pump. How exhilarating! And stressful. Too much insulin can kill me quickly. Not enough can kill me a little less quickly. Management struggles, the cost of insulin, and poor access to care can kill me slowly or quickly. Type 1s live every day with all this awareness knocking around in our brains, and––like so many who live with chronic illness––become more prone to depression, anxiety, and feelings of hopelessness.
- Which is why we love our posse. I felt pretty alone when I was first diagnosed, trying to explain over and over to friends and family what was going on. Especially since I lived almost a year thinking I was type 2, not type 1, it has stuck in some people’s heads that I’m type 2 and I get tired of explaining. Finding other type 1s has been the best. I made a whole separate IG account just for following and interacting with other type 1s around the world. They’re the only ones who really get me on that level!
- It’s a super expensive disease to have in the U.S. You’ve probably heard by now that insulin is criminally overpriced in the U.S., for no reason but straight-up greed. Depending on insulin requirements and medical devices, an insulin-dependent diabetic of whatever type can spend $4,000-$10,000 a year or more for everything we need, and that’s with insurance. Something’s got to change.
- The symptoms are surprisingly easy to miss. If there’s one thing you take away from this article, it’s that you know the symptoms of type 1 and maybe someday save a life — your own or someone else’s. Especially in Covid-19 times and flu season, it would be easy to miss a type 1 diagnosis, particularly if you experience a slower onset, as I did. Extreme thirst, peeing all the time, unexplained weight loss, crazy hunger, and blurry vision are the big ones. But what really tipped me off? A yeast infection. There can also fatigue, weakness, nausea, and stomach pain.
If you experience these things and just know there’s something off in your body, go get checked out. And remember, if a type 2 diagnosis doesn’t feel right, don’t let your weight or age keep your doctor from giving you the right tests. Download and share the infographic below, or visit the American Diabetes Association for more information.