Poor Interoception: When Your Body Keeps Secrets From You

The Bladder of Steel, one of my superpowers. I can do an 11-hour drive without stopping. I can work the booth at a trade show or festival on my own without having to pee–or even find food and water (same issue, different things to not actually brag about). I can hyperfocus on a project and never have to break my rhythm. I can make fun of all my friends for having tiny, weak children’s bladders. Turns out, this is not actually a good thing, a matter of self control or a physical strength. No, it’s the opposite. It’s a matter of my body not talking to my brain, leaving my bladder and other organs to scream into the void that they need some attention, whether that’s a bathroom break, a snack, or even regular breathing.

When you search for “interoception” online, lots of mindfulness/meditation-related results pop up. The topic has apparently exploded in popularity and research the past few years. And while it’s all absolutely related, there’s a difference between neurotypical people “not listening to their bodies’ needs” and the severity–and danger–of missed signals commonly experienced by autistics and others with sensory processing disorders. Considering the number of dangerous situations I’ve found myself in, chances are I’ll be that guy who dies from missing/ignoring a heart attack or appendicitis.

Poor (or undeveloped) interoception is common in children, not knowing when they’re hungry or need the bathroom. This sense is something that’s supposed to develop with age, but some of us are real standouts and interoception doesn’t develop, leaving a person to go their whole life struggling with basic homeostasis and emotions, as their organs’ receptors aren’t reading or handing off information to their brains.

The thing about my going all day without peeing, or being known as “low blood sugar Michele” by some really isn’t as funny as I always thought it was. If I’m distracted, I will absolutely forget to eat until my head feels sparkly and my body panics because it needs food. If I’m working an event, I’ll be focused on having “pleasant face” (I’m commonly flat-faced and -toned) and forget to blink enough, then my eyes are swollen and red by the end of the day. Heatstroke and dehydration sneak up on me even when I’m trying to be careful. And super fun, often when I’m doing something that takes concentration, like cooking a multiple-component meal with lots of pans and other moving parts to make sure everything is done at the same time, I forget to breathe. I don’t hold my breath–I just forget to breathe and almost pass out for no good reason.

Sometimes I’ll feel a vague discomfort but won’t be able to identify exactly where or what it is. When my stomach hurts, I reach for bread and water because maybe I’m hungry or thirsty or raw from eating aspirin and vitamins at the same time or having a bad reaction to something I ate earlier. Whatever it is, I figure bread and water might help and probably won’t hurt. In my twenties, right up until the time I finally got a hysterectomy, I was in surgery six times for endometriosis, fibroids, and ovarian cysts. Every time, I had the same post-op report: “Once we got in there, it was much worse than we thought. How were you not in more pain?”

<shrugs shoulders>

Physical danger aside, this guessing game my mind plays with my body leads to a fairly constant, low-level, almost a base of anxiety. It makes sense, if I’ve spent my life putting effort into all those things that are supposed to be automatic, trying to keep myself alive and well, and not always getting it right. Now, I’ve really only focused on these issues since my autism research and diagnosis, realizing they’re all connected. Up to now, I’ve treated them as some of my less delightful quirks and not done a great job of taking care of myself. As an adult, I’m comfortable enlisting friends and family to help me out when I’m with them. For instance, when I work events, people know that I’m going to be focused on the job, so they need to remind me to eat a Clif bar at least, if I don’t feel like finding food, and to take a bathroom break even if I don’t feel like I need to.

My partner and I joke about how I’m my own Tamagotchi. I tend to eat by the clock now, since “eating when you’re hungry” isn’t always a thing for me. And I’ve been using the Tiimo app on my phone, with water and bathroom reminders set throughout the day. This app has also been helpful for executive function things like brushing my teeth, cleaning my cat’s litter box, and watering my plant.

And yeah, maybe interoception exercises could help, I don’t know. I honestly am feeling great about the progress I’ve made already, and I’m excited to see how much healthier and better overall I will feel even a year from now. And not to look back in a negative way, but It’s just another thing I wish we knew about when I was growing up. It’s pretty ridiculous that it took me until my mid-forties to connect these dots and to feel OK about getting help with the most basic of needs. But as with many behaviors of my infancy and early childhood, the fact that I was the one not-ticklish kid would probably be a red flag now, but in the ’70s not so much.

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