I recently saw a TikTok “theory” that claimed setting an alarm for a specific time in the morning and imagining a task that you’d complete at that time helps neurodivergent (hi!) people get up in the mornings. Even though I’m usually a morning person, I had been struggling to wake up all last week.  So, I set my alarm for 6:28 AM on Thursday hoping I’d get my butt up and go to the gym before I started my work day.

At 6:28, my alarm went off. 

I hit snooze. 

At 6:30, my alarm went off again. 

I hit snooze again.

I just couldn’t get my head up off my pillow. For some people, (not morning people) that’s normal. For me, not so much. I fell back asleep and before I knew it, I finally woke up (no alarm) at 7:23 AM. That’s…late for me.

Usually when I struggle so much to wake up it’s a consequence of waking up with low sugar so that was my first thought. I grabbed my phone and to look at my Dexcom app and check my glucose level (AKA, my “sugar”). According to the app, it was 129. That is *chefs kiss* perfect sugar in my book. 

Consequently, my next thought: “I just slept in, I guess.” 

A couple minutes later, I didn’t feel right so I checked my sugar using a dusty crusty old sugar checker to see what my actual blood sugar was. A “sugar checker” is a device that I put a chem strip in, poke my finger with a needle, and then put blood on the chem strip to check literally how much blood is in my sugar. It’s the most accurate way to checking your sugar. Some people (cough, cough, Nick Jonas & Dexcom) like to call this “finger pricks.” Side note: I call a blood glucose monitor my dusty crusty sugar checker because I’ve been using this same technology since I was a child.

Turns out I was right. My sugar was 53…not 129. 76 units off! That’s a big deal. Waking up (or struggling to wake up) at 53 is a big deal. My next thought was: I bet this is why I’ve had a hard time waking up this week. I’ve probably been running low when I thought it was perfect. Scary. 

Over the years, I’ve heard so much about the amazing technology and technological advancements for diabetes. I agree with that. The fact that I can poke a little thread of sensor technology into my skin, leave it there for 10 days, and it can generally tell me if my sugar is going up or down… that is amazing. There’s no questioning, doubting, or invalidating that.  

What people don’t often talk about is calibration errors, which happen all the time when you use sensor technology, and how scary and frustrating they can be. Dexcom often claims that “finger pricks” are unnecessary in their advertisements but then explains in their guides that checking your sugar may be necessary. Why is there such a disconnect with the technical realities and lived realities from the advertisements?

The worst part is that these sentiments trickle down into our everyday interactions – the ones that very much so validate or invalidate our experiences. The rhetoric that advanced diabetes technology has solved the struggles of maintenance, that we can go about our days without worrying about the highs and lows – is false. This rhetoric materializes into providers (endocrinologists, nurses, educators, etc.) invalidating the reality that many of us struggle with using sensor and pump technology. Sometimes, it makes it harder to have any preferences around whether you want to use them. If you don’t, you’re seen as non-compliant. Why wouldn’t you want to make your life easier? Even if that means waking up at 3 AM with ketoacidosis – because if that’s happening – you’re just not using it right! (That’s what I’ve been told, at least).

After waking up with sweat dripping down my face, half-conscious, gaslighting myself that my sugar was perfect and then seeing that I was right was a big sense of validation that I do, in fact, know my body well. And that the Dexcom wasn’t right.

This deep sense of knowledge and understanding of my own body and a technology that often invalidates that experience but is seen as more reliable has lead me to getting a whole masters degree in Science Technology and Society, studying the psychosocial relationships between patients and technology, and a career in patient advocacy. It’s even lead me to naming this whole blog Calibration Errors.

I’m really excited to explore more topics and have honest conversations with various people about misrepresentation of the very human patient experience and health technology.

Check out the podcast episode below!