T1d in the wild: device etiquette


#1

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!

WRITTEN BY: Alexi Melvin


#2

Awesome reading and visuals !! Hit home to me , tonight in particular, as I had ( lazily, brashly , quickly) fully changed my infusion site at dinner tonight in a restaurant at the table and wondered “ could I be the only type 1 to have ever done this particular public maneuver?” I really would love to know the answer !!


#3

Mine have all been pretty positive. A few years ago I was riding down in the elevator of the parking garage near work and happened to get out my Dexcom remote to see how things were going. Young-ish guy next to me noticed and said, “You use a CGM huh? My kid was just diagnosed and we’re looking into getting one.” And a BG meter left out on a desktop has led to meeting two other T1s where I work, once because I leave mine out all the time and once because the other guy did. Always nice to meet other members of the tribe!


#4

I’m not a cyborg (yet), but I’ve gotten into some of the same situations when testing in public. Sometimes on planes, it leads to interesting conversations. I haven’t yet been belittled or castigated for testing in public, but I’m still pretty self-conscious about it.

But…just a week ago, I was having dinner with a new friend who just moved to my little University town. We were in a Mexican restaurant, and I tested at the table before ordering (to see what seemed a wise choice off the menu). Then my new buddy goes “Whoah! Type 1 or 2?” Turns out, he’s Type 1 as well, and is now my first in-person Type 1 friend I’ve made. Really quite pleased.


#5

What an awesome post! Only once did someone get really interested what I was doing when I did a finger stick and it was because she wanted to know all about the app I was using. I was on a cruise a few weeks ago and saw a girl with a G4 or G5 on her arm, showed her my G6 and her mom came over to talk to me about it which was cool.

I am never shy about testing or injecting in public :smiley:


#6

I find kids are normally much more open minded about these things than adults. I work at a daycare and all the kids are aware of my pump. They ask all the time if they can see it, and after they found my site on my arm one time, they always run their hands along my arms to see if they can find it again. They know not to pull or poke, and are always super gentle. When they heard the dexcom beep high, they asked about it, and I said it was monitoring the sugar in my blood. A kid asked, “miss Becky, why do you have blood?” I told him everyone has blood and everyone has sugar in their blood, but my pancreas was broken so sometimes I had too little or too much sugar in blood. My boss came in 5 minutes later, and a little girl says, “my pancreas is broken” and a little boy says, “my pancreas was broken, but now its fixed”. My boss was more uncomfortable than any of the kids lol. Another time a little girl told me, “I don’t have an insulin pump, but when I grow up I’m going to get one.” I cant imagine what their parents think, but hopefully its teaching them something valuable so I keep explaining it to them.


#7

I recently got my CGM info onto an Apple Watch and I have to say that I didn’t realize how I felt about having a “beeper” on my belt (that is a Dexcom receiver) until I didn’t have it anymore. I kind of love blending in with our device-obsessed world with my smartwatch superpower.

Before I had a pump, I used to inject with a syringe in restaurants and other places. I never felt like hiding in the bathroom. The syringe made some people uncomfortable. No one was ever rude to me, that I remember, but some people made lame jokes that betrayed their discomfort with the whole thing. I sort of brazened it out, but it wasn’t really fun for me.


#8

Nope, I have done this once. (I was sitting with a friend who also has T1D who talked me out of going to the washroom to do it.)


#9

I’m very open about my diabetes and don’t care if people see my devices or me doing things like testing. I do these things whenever and wherever I need to. I do try to be discreet when doing shots, though.

The weirdest expereince I’ve ever had was about a month ago. I was heading to a medical appointment and my CGM was alarming that I was low. I had previously treated twice already and it was still showing a flatline at LOW, so I stopped into a drugstore and bought some more glucose tablets (as I was out) and decided that I should test before treating a third time. I sat down where the blood pressure monitors are. A lady came and loitered around for a couple minutes and then asked if I would be there a while (no idea why she asked this). I said no, and she saw the meter in my lap and lancing device in my hand and went, “WHAT IS THAT?! Is that one of those e-cigarettes?! You’re not allowed to smoke in here, you know!!” I said it was to check my blood sugar. She clearly couldn’t hear half of what I was saying, so I repeated myself and added that I had diabetes and needed to see if my blood sugar was low, and she went, “Oh, to check your blood pressure? You’re fine then, dear, don’t worry,” and patted my shoulder and walked away. Oddest experience ever.

Aside from that, I have never had anyone make a negative comment about me doing any diabetes-related task in public.