Tag: diabetes

180 Decisions A Day

There’s a number that has been floating around the Diabetes Online Community (DOC) for a while now, mostly on Instagram. It says that people with type 1 diabetes make 180 extra decisions a day related to their diabetes. Wow, that seems like a lot! No wonder I’m so tired all the time.

The first time I saw this claim I was kind of surprised by the number (it seemed really big), but didn’t think too deeply about it. Every few months, this number would come around for another cycle of sharing and commiserating. And every time it would bother me more and more.

This last time, I decided to finally look into where this claim came from and, as it turns out, this claim doesn’t seem to have a basis in any research. Best I can tell, it originated in a 2014 blog post/press release from Stanford for a study that was about maintaining steady blood glucose levels overnight. The blog post, which was written by a staff science writer, makes this claim at the beginning without any citation or reference. People see the study cited and assume that this is where the number came from, but it’s not. When you actually look up the study, the word “decisions” isn’t even in the article. The number 180 comes up once, but only regarding the maximum number of minutes that the automated insulin pump delivery system should be suspended per night.

So why do people trust this claim? And why does it seem to be everywhere? If you Google “diabetes 180 decisions a day” almost 8 million results come up, many from very mainstream diabetes institutions. First of all, it’s a number, which conveys scientific certainty and research. People are likely to trust numbers because they believe that they are objective and represent some kind of fact or reality. Second, this claim’s source is Stanford Medicine, which is a reputable organization that people are familiar with. Most people (or literally anyone else, it seems) are not going to check the source to see if it’s accurate or not. We trust the article from Stanford Medicine because we don’t really have a good reason not to. And this is behavior of not just “regular” people on Instagram, but also other researchers, who should actually know better.

Moreover, and more importantly I think, the number doesn’t make any sense. Let’s say that you sleep 8 hours a night and are awake for 16 hours a day, which is 960 minutes. If you were making 180 diabetes decisions a day, you would need to be making a health-related decision every 5 minutes you were awake, all day every day. If you have a CGM, getting a blood sugar reading every 5 minutes, this would mean that you looked at every single one of those readings as they came in and made some kind of decision. No one is doing that. Humans are not great at estimating the frequency of events like this, so 180 seems right, even if it isn’t. Now, if you’re on an automated insulin pump system (like with Tandem t:slim x2 or Omnipod 5), that pump is making a decision every 5 minutes – but you are not.

And if we assume that you are not sleeping through the night, since diabetes occasionally makes that difficult, you’d still be making a diabetes decision every 8 minutes, all day and all night, if you were trying to get to 180.

There’s no way this claim can be true – and if you think you are actually making that many diabetes-related decisions in one day, please talk to a certified diabetes educator so that they can help relieve some of that burden because that is not normal or ok.

So why do people keep sharing it? I think the main reason is that it is really hard to explain to non-diabetics the mental burden of this disease. We do have to make a lot of extra decisions every day to keep ourselves alive and healthy. It is at times overwhelming. It is challenging and hard to predict. It is constantly in the back of your mind. I feel lucky when I can forget about it entirely for a couple hours. And we want other people to understand the weight of this burden. So when we find what we think is a reputable, research-based claim about how objectively difficult this is, and we share it. Because it feels true. Even when it actually isn’t.

Insulin-a-versary

It’s my two year insulin-a-versary! This is not to be confused with my dia-versary, the anniversary of my diabetes diagnosis which is in late December. These two dates, my initial diagnosis date and my correct diagnosis date, occurred more than a year apart from each other. Which is part of the reason why today is special for me. (You can read more about my diagnosis story here.)

It might seem strange to celebrate the day that my life entirely changed and I had to start injecting myself multiple times a day (and will have to do so for the rest of my life). But it is also the day that I started feeling relief, started feeling heard, and started really feeling better. This chronic illness had slowly been creeping up on me over years and years, taking away my energy, my happiness, and my ability to live my life. Getting my correct diagnosis as type 1 and starting daily insulin injections truly gave me my life back. I had been slowly dying, my body literally eating itself from the inside, and things were finally turning around.

What I didn’t know at the time of my initial diagnosis was that there was something called LADA, or latent autoimmune diabetes in adults, which is basically a very slow-progressing form of type 1. Before my original diagnosis I didn’t even realize that adults could get type 1, and had no idea there was a slow moving version of it1. Many doctors are not even aware of it, which is one reason why so many adults get misdiagnosed like I did, even though I presented with the classic symptoms. It was a frustrating year after my initial diagnosis and brief hospital stay, where the type 2 medications they original prescribed me worked ok for a few months but then slowly stopped helping. And I didn’t know why. I was doing all of the things I was supposed to and I was beginning to feel like utter crap all of the time again. I had one doctor blame me for not trying hard enough. It was not great. Luckily I eventually got a consult with an endocrinologist and within five minutes of just talking/listening to me, she told me I had type 1 and gave me some insulin.

Before that day two years ago, insulin had been held over my head as a punishment for not doing things properly. It really messed with me. And I think that a lot of the public also get this message (especially around type 2 diabetes), that having to inject a life-sustaining hormone into your body is a sign of weakness and failure. It is not. Everyone, every single person, needs insulin to survive. Most people’s bodies make their own. And most people have no idea how much insulin they use.

I tried hard for a long time to use as little insulin as possible. Because I had still internalized this message that insulin was bad. I didn’t eat foods that I wanted to eat because I knew I would need a lot of insulin for them and kept myself on a low-carb diet for months just because I was trying to be “good” and only use a certain amount of insulin every day. This was partly because my prescription was for a certain amount and I knew if I went over, I would run out early and that would be bad. But it was also because I didn’t think it was ok to just use the amount that my body needed for the food and life that I wanted.

I’m happy to say that I don’t feel that way anymore, but it took a long time. I also had to talk to my endo and have her prescribe more than my “average” amount per day so that I wouldn’t feel anxiety anymore about running out (which I almost did twice in my first eight months and actually only didn’t run out because I bought some extra insulin in Canada). I definitely use more insulin now than I did two years ago and there’s nothing wrong with that.

Some things that I didn’t realize two years ago would soon become a part of my life:

  • I have to schedule exercise into my day in a complex and nuanced way that I didn’t think twice about before
  • Some carbs are worth calculating for and some are not
  • I carb count things I see on TV without realizing I’m doing it
  • I hate the American health insurance system with every fiber of my being
  • Being your own pancreas is a lot of work and you never get a break from it
  • Anything can become a normal part of your day, even having two medical devices attached to you 24/7
  • Post-apocalyptic fiction is no longer as interesting to me as it once was because I can’t forget the fact that I would die a slow, painful death in any kind of scenario like that
  • I have opinions about different needle manufacturing companies (Tandem just changed the brand of needles that come with their insulin pump cartridges and I’m kind of annoyed)

This year, 2021, is also 100 years after insulin was first discovered. The 99th anniversary of the first insulin injection in a patient was earlier this week. In America, insulin is still too expensive. The list price, set by the pharmaceutical companies, is around $300 per vial when it only costs them about $5 to make it. They are extorting diabetics because we will literally die without it. It hasn’t changed in over twenty years and the price just keeps going up. In basically every other country, insulin is a reasonable price or even free. It can also be bought over the counter in most countries, which would be a huge positive change here. The prescription barrier, in addition to the financial one, is another way that insulin is not accessible here. It needs to stop. We need insulin for all and we need it now.

  1. Also, side note: fun fact! There are lots of types of diabetes! Not just the two that you’re familiar with. There’s gestational, type 3c, MODY, and some other ones. None of them – including type 2 – are caused by eating too much sugar. ↩