T1D in the Wild: Device Etiquette


Welcome to T1D in the Wild! A new column in which Alexi discusses her gritty and raw, sometimes uncomfortable but often amusing experiences with being a Type 1 diabetic out in a sea of non-T1Ds, (but sometimes T1Ds!) Alexi Melvin is a writer, artist and actress in the Bay Area and serves as a proud member of the Beyond Type 1 Leadership CouncilShe will answer your questions with regard to T1D “etiquette” as it relates to each week’s theme.

T1D Devices in the Wild

There is no denying it, traversing our day-to-day lives and trying to maintain somewhat of an average human status with our T1D devices clunking around or stuck to our bodies can be awkward as hell.

For a long while, pump-wearers that were living with T1D anywhere between the mid-eighties and mid-nineties really only had to deal with one question or assumption: “Is that your beeper?”

Now, however, T1D technology has catapulted to a level where people are more likely to mistake your pump or continuous glucose monitor for some kind of newfangled fitness tracking device – or they simply assume you’re a straight up cyborg. Either way.

I recall one year while I was in Hawaii on vacation (and was at that time wearing the OmniPod tubeless insulin pump), I got into the elevator to head down to the beach, minding my own business. I was wearing shorts, and the “pod” was minding its own business on my leg.

“What’s THAT?!” A particularly brazen man asked quite loudly, pointing right at the thing.

Another time while waiting in line for an airplane bathroom, a toddler reached out, grabbed my CGM and tugged! Thankfully, the little guy’s grip wasn’t strong enough to rip it off — but still.

There is also our most basic “device” to consider – our glucometers. I haven’t met one person with Type 1 who hasn’t received a strange look or two while testing in public.

On the opposite end of the spectrum, there have been many times that I’ve noticed other T1Ds “in the wild” that were wearing the same pumps and/or CGMs that I was wearing, and I so badly wanted to approach them.

But there are many things to consider here – how we react to those who are uninformed about our various gadgets, and how we approach other people with Type 1 out in the world. So, with that, I will address some questions about “device etiquette!”

How should you respond to someone who (perhaps a bit rudely) asks what your device is?

First and foremost, assess your own comfort level in the moment. Of course, we should never be ashamed of our devices, but if the person is outwardly rude, do not feel obligated to engage with them. You can politely tell them that it is a medical device and say nothing else. But, in my opinion, all of these instances can be turned into chances to educate. Ask them if they are at all familiar with T1D. If they are, great! If not, let them know that this device, whether it be pump or CGM, is an awesome, innovative and life-saving tool.

In the case of the man in the elevator, after a few moments of being taken aback, I informed him that it was my insulin pump. He turned out to know all about insulin pumps – his nephew had Type 1 – but he had never seen one without tubes. This presented an opportunity for the guy to tell his nephew about an alternative pump option that may wind up working much better for him.

What if my pump or CGM gets dislodged (or malfunctions) in public? And what if it’s someone else’s fault?

If your pump or CGM comes off or has a glitch while you’re out and about, deal with it exactly as you would if you were at home. It is never a bad idea to bring backup supplies with you, anywhere you go. Allow yourself the time and a comfortable enough space to handle the site change or sensor switch so that you can get back to your fully functioning life! Don’t rush it, and don’t let it stress you out. Breathe.

When the toddler nearly dislodged the CGM on my arm, the mom was understandably mortified and apologized profusely. I could tell that she was embarrassed, so I simply let her know that it was a medical device that monitored my blood sugar level, but then made sure to add that there was absolutely no harm done. After that, she took a moment to tell the little boy, in words that he would understand, that the “thing” on my arm was delicate and that it was, in general, not okay to touch other people’s things without asking. (Good job, Mom!)

If you happen to be around someone that you interact with very often when the malfunction or “close call” occurs, (like a colleague or fellow student) and not just a random toddler,  you could even consider letting them watch what you have to do to correct the issue.

I don’t have a CGM. Is it appropriate to test in public?

Absolutely! Testing our blood sugar levels consistently can be a matter of life and death. I would not advocate for leaving bloody strips on the table while at a restaurant or on your desk at school – we can still be mindful about things like that. But nobody would complain about someone who needed to use their asthma inhaler in public, would they? Nope. Test away.

Is it okay to approach other T1Ds if I notice them wearing devices?

This is a tricky one, because everyone is going to have their own unique feelings about discussing their T1D at any given moment. Are they in a bad mood? Are they having a particularly frustrating day with their CGM? Or, did they just get the news back from their endocrinologist that their A1C is right on target? Who knows!

A good rule of thumb here is to treat someone the same way you would want to be treated, and always ask permission. “Hi! Please stop me if I am bothering you, but I noticed that you are wearing a Dexcom. I have mine on my arm, too!” From there, you will be able to assess their reaction. It will be clear if they are simply not feeling it that day, or if they would be totally stoked to geek out on your awesome T1D parallels!

Have a question for Alexi? Send an email to alexi@beyondtype1.org with the Subject Line “T1D in the Wild”

WRITTEN BY Alexi Melvin, POSTED , UPDATED 09/02/21

Alexi Melvin is a writer, artist and actress in the Bay Area. She also serves as a member of the Beyond Type 1 Leadership Council. Alexi studied at the New School University in Manhattan as well as the Lee Strasberg Theatre & Film Institute. She has written for multiple publications such as the San Francisco Chronicle and has been a regular contributor for Beyond Type 1 for many years. You can also hear her voice in two Star Wars films. She has been a loyal advocate for Type 1 diabetes awareness, education and fundraising since she was diagnosed in 2003. She hopes to continue to empower and be a voice for those who choose to embrace Type 1 diabetes as a part of their lives, but at the same time, do not allow it to define them. Instagram: @alexienergyart Twitter: @aleximelvin