Lessons from one year of living with type 1 diabetes

It's been a wild year

This week marks one year since I was diagnosed with type 1 diabetes at the age of 32. I haven’t talked about it much here or at all, other than to my saint of a husband who listens to me talk about it nonstop. I learned quickly in the beginning that if you talk about it, you open yourself up to lots of questions ranging from the harmlessly dumb but annoying to the truly idiotic and offensive, and having to explain your disease to people all the time is very exhausting. Sometimes there is even judgment, so my preference has been to not even open myself up to that by just talking about it as little as possible. But now that it’s been a year, I have some things to say, and felt maybe it’s finally time to unload them. Because the truth is, diabetes takes up a lot of my brain space, time, and energy every day, and pretending it doesn’t exist isn’t really fair or true.

So, here are some things I’ve learned in the past year.

1. Diabetes is an extremely stigmatized disease, and it is really fucking unfair. Type 1 is an autoimmune disease, but most people don’t know or understand that. One of the reasons I dread telling people I have diabetes is because many tend to assume diabetics get the disease through poor lifestyle choices, poor diet, lack of exercise, and being overweight, when actually type 1 just comes from your immune system deciding to attack your own pancreas.

   These stereotypes are also pretty unfair to people with type 2 diabetes; genetics and family history often play a bigger role in whether you’ll get type 2 diabetes than what your eating habits look like. But that doesn’t stop much of society from unconsciously assuming that diabetes, of any type, is a disease you get from eating too much sugar. People have made all kinds of comments to me as a result, and on a few occasions, some have even physically tried to take certain foods away from me “so you won’t get tempted,” as if diabetes is a disease I got because I just don’t have enough self-control.

2. It’s not about sugar, it’s about carbohydrates. People will often ask me “you can’t eat this since it has sugar, right?” But it’s actually not about sugar alone; blood glucose levels are affected by any type of carbohydrate. Just because something is sugar-free doesn’t mean it’s inherently better for a diabetic. Anything with carbs requires insulin. Bread, pasta, potatoes, rice: all of these foods are high in carbs and affect our blood sugar, even if they don’t have sugar.

   Anti-diet culture advocates on social media often talk about how carbs aren’t bad and you should eat all the carbs you want. Maybe that’s true for a regular person, but for me, eating carbs is a complicated decision. Sometimes I don’t want to eat the carbs—and there’s nothing wrong with that! It is not always ~diet culture~ if you want to skip the carbs.

3. People with type 1 diabetes can actually eat anything they want — but it requires a ton of complicated microdecisions. Someone early on asked me, “So what can you absolutely not eat?” People want it to be black and white, but it’s not that simple. There are no concrete blanket rules, no foods that are totally off-limits. It’s nuanced! This, I’ve found, is very hard for people to understand. We can eat anything we want, we just have to take more insulin when we eat something with more carbs. And every diabetic chooses to manage their disease differently. Some people choose to eat a low carb diet to minimize the risk of high or low blood sugar spikes that Allison Gilbert describes here, since guessing the amount of carbs in your food is really hard and you can often get it wrong, no matter how hard you try. If you eat fewer carbs, you can have fewer spikes. But some diabetics feel this strips a lot of joy out of life, and they prefer to eat what they want and take more insulin for it. Neither way is better than the other. It’s just a matter of personal preference.

   Sometimes preferences change depending on what situation you’re in. I tend to eat lower carb at home when I’m cooking my meals because it’s easier. But sometimes if I want a doughnut from Fan-Fan or a croissant from Clementine Bakery, I’m just going to do it. When I go to restaurants, it totally depends on my mood and how my blood sugar has been lately; if I’ve had a bad blood sugar day, I might try to order something low carb, but if I’m in the mood, I might just say fuck it and order whatever I want and deal with the blood sugar consequences later.

4. People with Type 1 diabetes can live a completely full and normal life. Taking insulin every day is not the world-ending scenario most people think it is. (If you know someone with Type 1, don’t act like it is. I’m not looking for pity.) Yes, it’s annoying and cumbersome; I have to bring a little pencil bag full of diabetes gear with me and inject before I eat anything with carbs. It takes a little more planning ahead when I go out or travel, but also, the bag fits in my purse and can go with me anywhere. Insulin pens are small and the needles are tiny and mostly painless, and it turns out I can inject myself pretty discreetly at restaurants, in cars, on planes, and anywhere else. (The pandemic put more limits on my lifestyle than diabetes has, to be honest.) I never, ever want anyone to think my life is limited in any way because of diabetes — it’s a condition I have to manage, but it doesn’t take any possibilities away from my life.

5. It’s an invisible illness, so most people might forget you have it — and often, I want them to! — but the reality is that I am constantly thinking about my blood sugar numbers throughout every single day. I wear a continuous glucose monitor on my arm, which reads my blood sugar every five minutes and sends that data to my phone and my Apple Watch. This has been the best tool for managing my diabetes and I can’t imagine living without it anymore. But it’s a blessing and a curse; having access to that kind of constant data means I’m constantly thinking about it. Before every meal and every snack, no matter how small, I look at my blood sugar numbers first to make a decision about what I’m going to eat and how much insulin I’m going to take. After I eat, I start to see in real-time how that particular food is impacting my blood sugar.

   The Dexcom also sounds alarms when my blood sugar gets too high or too low. At night, this can be a blessing: if my blood sugar gets too low, which can be dangerous, the Dexcom alarms will wake me up so I can treat my low blood sugar with juice or something to bring it back up.

   But the alarms have also ruined my sleep and interrupted important work meetings. There’s no predicting when your blood sugar might go low, and it often happens at inconvenient times. I’ve gone low in interviews, in meetings with executives, and while running a Zoom staff meeting with 80 people. My usual workday is a series of back-to-back Zoom calls, and sometimes if I forgot to restock the stash of low blood sugar supplies I keep at my desk, I’ll be desperately hoping the other person will end the call early so I can deal with my blood sugar in the few minutes I might get between calls.

6. Blood sugar numbers are not a measure of your self-worth, nor are they a moral failing. It’s really easy, almost dangerously so, to become obsessive about blood sugar numbers, to beat yourself up over a bad day where your blood sugar was too high and think that you’ve failed. For me, I can become obsessive about my “time in range”: a metric where my continuous glucose monitor tells me what % of the day my blood sugar numbers remained in my target range. The general recommendation is to aim for 70%, but as a former straight-A student and overachiever, 70% reads like a C- to me, so I obsess over trying to get my TIR is 90% or higher most days.

   The truth is, you’re not a bad person if you ate a donut and briefly had high blood sugar. I’m not a bad person if my TIR is only 70% some days. We’re just human beings who can’t be expected to be perfect all of the time. (And we should be allowed to eat the fucking donut without judgment from others.)

7. Society regularly forgets about those with chronic illnesses and/or disabilities, especially “invisible” illnesses. Health is very easy to take for granted when you are a healthy person without any conditions or issues. Nothing has laid this bare more than the conversation around Covid. I’ve been frustrated by some of the smugness on social media from young-ish, otherwise healthy people who are at low risk of having a severe case of Covid, who have said things like, “People should chill out more, everyone will get it at some point, but if you’re vaccinated, it’ll be mild and you’ll be fine.” This group of people has insisted that we should relax restrictions and resume normal lives, and some have accused those who are more Covid-cautious of being paranoid and irrational.

   For the millions of people who have underlying health conditions, we do not have the same privilege of taking our health for granted. We can’t assume that if we get Covid it will be mild and we’ll be “fine.” For many people in high-risk groups, the daily calculations of what’s safe and what’s risky are very, very different. It’s a privilege to be healthy, but healthy people should never assume that “everyone” is healthy and faces the same level of risk.

   Even though I spent much of the year afraid to talk about my diabetes, I’ve come to really appreciate the work of diabetes advocates and disability advocates who are constantly sharing their struggles publicly in order to make others aware of how unfair our systems often are to people with health conditions.

If you made it to the end of this, thanks for reading — I appreciate that anyone is willing to take the time to listen to me go on for so long about diabetes. It’s been a wild year learning how to manage this (stupid) disease, but I’m generally feeling good about how I’ve managed the condition without letting it control my life.

Good things to read

The exhausting concept of the “2022 rebrand,” Vox.

How hobbies infiltrated American life, The Atlantic.

The case against the trauma plot, The New Yorker.

What daily routine videos actually show us, New York Times.

The power of reclaiming my Asian name, Washington Post.

Wordle is a love story, New York Times.

Is the future of food the future we want?, Eater.

Resolutions are not the vibe for 2022, The Atlantic. Gonna say I called this.

It’s time to embrace slow productivity, The New Yorker.

Good things to cook

This week I’m making: Mediterranean steak bowls. Stuffed peppers. Salmon shawarma bowls. Asian-ish chicken lettuce wraps.

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