What’s Calibration Errors?
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!
What’s Calibration Errors? – Calibration ErrorsMy name is Kristy. As a Type 1 diabetic for almost 30 years, I’ve observed a common sentiment that diabetes technology solves a lot of our struggles maintaining this condition. In reality, sometimes the technology can be the problem itself. I hope to create a podcast in which me, my friends, colleagues, mentors, etc. can have honest conversations about ways the health industry (and society) misrepresents the human experience when talking about health technology. Music credit: Lemon Drops by Artifical.Music
Legislative Advocacy Master Class, done!
Happy Friday! I’m excited to share that at the beginning of January, I completed the Patients Rising Advocacy Master Class. The class covered essential patient advocacy topics such as the importance of patient involvement in #FDA advisory committees and drug utilization review boards, the lack of transparency around PBMs, and more. It personally gave me a safe space to process many hard experiences with affording essential care and strategize how I can share my story to better serve our communities and impact policy. If you’re interested in joining the Master Class, I highly recommend it. You can find more information at https://lnkd.in/eVeh8C6J.
The Elephant in the Room on World Diabetes Day
It seems that every couple of years or so the unethical price of insulin gets a spotlight. Every time it happens, I wonder how the consumption of this information (sometimes, misinformation) impacts non-diabetics. Does it incentivize people to learn more? Does it drive them to take action? Does it offer empathy for those dealing with the shit show that is managing Type 1 Diabetes in America?
I recently listened to a Terrible, Thanks for Asking (I love Nora McInerny) episode called “After the Headlines” about the real people and trauma behind news headlines we read. I couldn’t help but make a connection between that episode (highly recommend – go listen!) and the headlines about insulin the past few days. It’s good timing, given that today is #worlddiabetesday.
People tend to have a lot to say about diabetics. I’ve often felt as though the more people informally know about diabetes, the less they feel a need to listen to diabetics. That the news article or the secondhand story they heard is enough information to infantilize and ignore those who live it. Over the years, I’ve researched how rhetoric, discourse, and perception of our disease influences very tangible realities like the burden of care and our mental health.
In May, I hit 28 years with diabetes. It’s taken me all of those years of living with it to fully comprehend the emotional, mental, and physical load it’s taken. There were times I wasn’t sure if I’d make it this long – not because of the disease itself, but because of the countless traumatic experiences trying to afford my medication and dealing with our healthcare system. I cannot tell you how many times I’ve gotten off the phone with a healthcare provider, nurse, insurance rep, pharmacists and said to myself: “they don’t care if I live or die – they just want me off the phone so they can say their job is done.” There have been exceptions, but, overall, the systemic treatment of diabetics has communicated a clear message to us: “we don’t care about you and we know more about your disease than you do.” That’s a hard message to constantly receive. And as a person with comorbid diseases who’s actively involved in other patient communities – it’s a message that so many people with rare and chronic illnesses know well.
It’s possible there are diabetics in your life who have had very traumatizing experiences just trying to survive. If you want to educate yourself, start with patient advocates and advocacy organizations who center diverse stories about our experiences. Learn more about the history of insulin, various types of insulin, coupon programs, and how we can better connect patients to cost-saving solutions that should be readily available. Most importantly, I urge you – let us be the main character of our stories. Let us tell you what we need to take care of ourselves, and support us via agency, compassion, and advocating for an equitable health system that provides us with affordable medication and treatment options that ease the burden of our care. Not exacerbate it.
I will be posting more about my journey throughout November (Diabetes Awareness Month) and releasing my podcast! Stay tuned.
In the meantime, here are some stellar places to start learning more:
- Beta Cell Podcast
- Beta Cell Foundation
- Diversity in Diabetes
- Miss Diabetes Education
- Access and Affordability Project