Type 1 diabetes in a nutshell

We have no idea what Type 1 Diabetes (T1D) is caused by. It isn’t caused by what you eat, and although it is most likely to develop in children, it can develop at any age. Genetics play a big role.

Like all autoimmune diseases, the immune system attacks your own body. In this case, it attacks cells that produce insulin.

There is nothing more misleading than the words “blood sugar.” It gives all the wrong ideas. Saying that T1D is about blood sugar is like saying golf is about your score. If you didn’t know anything about golf, you might assume that a higher score is better. Or that you get points by putting a ball in a hole. Because that’s how scores usually work.

sugar-free sugar
I’m pretty sure the bag is empty

Similarly, you might assume that someone with Type 1 diabetes shouldn’t eat sugar. Or that they have heaps of energy when their blood sugar is high. Or that “burning sugar”, for instance by exercising, will lower their blood sugar. None of these is necessarily true. So forget the phrase “blood sugar.”

Many people find it hard to believe that “healthy” foods like fruit juice and Weet-Bix and plain rice are among the worst possible things to consume. Roughly speaking. Some people can successfully incorporate some of them into their diet without trouble. And they can be vital during a medical emergency.

Insulin injections are not “medication”. They are hormone replacement. Unfortunately, insulin requirements vary radically over the course of a day. The difficulty of living with T1D is not sharp stabby needles, but figuring out how much and when to inject, and then being “locked in” to what you injected, plus the nasty symptoms and inconvenience you get when things don’t go to plan.

This is because natural insulin can switch on and switch off in a few minutes, while injected insulin takes hours. And factors affecting insulin requirements include food, drink, exercise, stress, weather, altitude, season, illness, and often just “nobody knows.” In my case, epilepsy-induced hormonal changes are the hugest and most unmanageable component.

In the past, people with T1D had a fixed daily injection schedule. They also had a life expectancy of 30. Outcomes are a lot better these days, but patients need to work a lot harder to achieve this. Also, people can live more normal, less scheduled lives, but this requires even more work. It takes a lot of discipline, a lot of learning, a lot of thinking, and a lot of planning. As of writing, I am using 4 different kinds of insulins and doing about 10 injections a day, and pay through the nose for a continuous glucose monitor.

It’s a huge emotional burden to be held so responsible for your own health. What balance do you choose between making the most of life today and keeping your feet, eyes, and sense of touch 20 years from now? It’s a tough and unfair choice, and many people burn out.

This barely scratches the surface. There are so many details to learn, so many approaches, and so much that you won’t find in a book but you learn through personal experience. And not everyone with T1D has the space in their lives—or the medical support—to learn how to manage it well.

Many people with T1D are indignant about public misconceptions about the disease. But due to the staggering complexity of T1D I think it’s unreasonable to expect others to “get” it, especially with conflicting messages (“we can eat whatever we like” and “no thanks, it’s full of sugar” sometimes coming from the same person).

So instead of getting indignant, I think a lot about how to communicate. Short, intuitive, and as unconfusing as possible. That’s very hard to do. So hopefully my attempts will help others find new ways to communicate. And hopefully I’ve done a good job on this page.