What You Should and Shouldn't Say to People Wearing Visible Diabetes Devices
“Is that a pager?”
“What happened to your arm?”
“Is that a Fitbit?”
“Are you a robot?”
Some or all of these questions will be familiar to any person with type 1 diabetes (T1D) who wears a pump or continuous glucose monitor (CGM). Friends, family, coworkers, and even total strangers have lots of questions about the wearable technology that many T1Ds are sporting. While plenty of us are happy to drop some knowledge and educate curious bystanders, sometimes the timing, context, or tone of these questions can be awkward, annoying, or just kind of inappropriate.
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Here I’ll address some common questions by telling you a little bit about these intriguing gadgets, and I will also offer up some pointers on what you should and shouldn’t say to people who are wearing visible medical devices. (Just a quick disclaimer that there is no “universal consensus” on this stuff and I don’t claim to be speaking for everyone with T1D. That said, if you have T1D and you agree with this, feel free to share with your pancreatically-abled peers!)
It’s way cooler than a pager: It’s an insulin pump! As the name suggests, it “pumps” insulin into our bodies in super precise microdoses every few minutes, and then in larger doses (called boluses) when we eat or correct our blood glucose levels. The pager-looking part of the pump actually contains a small cartridge full of insulin, which is connected to a tube that clicks into an infusion site on our body. The infusion site is inserted using a long needle which is promptly removed, leaving a small tube or cannula underneath the skin so the insulin can drip into our body continuously, 24 hours a day.
The pump is an amazing tool, but it is expensive and can be cost-prohibitive. It also takes a lot of knowledge and effort to use it effectively, and for some people, it doesn’t work quite as well as shots (multiple daily injections, or MDI). For these reasons, the pump, though truly a wonderful technology, is not for everyone.
If you know someone who uses a pump are curious about it, first you should assess if they seem comfortable discussing their condition openly with you. If so, it would probably be OK to ask them about their pump, how they like it, how it works, and if they’ve named it (many of us have — it’s with us 24/7!). On the other hand, if you know someone who uses shots (MDI) you should not ask them why they don’t “just get a pump.” Also, please don’t wince when you see them inject, don’t ask them if it hurts, and definitely don’t ask them if they can “do that somewhere else.” They are doing what they need to do to continue living. You are free to avert your eyes.
Continuous Glucose Monitor (CGM):
It’s pretty common for people with T1D to wear CGMs on their abdomens, arms, or even legs. These devices help us keep track of the fluctuations in our blood glucose levels (BGs) on a constant basis. They involve the insertion of a small wire under the skin, which actually measures the amount of glucose in our interstitial fluid every five minutes and uses bluetooth to send the BG reading to our phones, pumps, watches, or special receivers. For many people this technology is a godsend and should really be available to everyone with type 1 diabetes (but, again this technology is sadly cost prohibitive), because it can help prevent life-threatening low blood sugars and allows users to know when to take insulin to correct a high BG. These devices can liberating T1Ds from a life of endless finger-pricking, and they can helping parents of little T1Ds manage their children’s BGs remotely.
It’s likely not a problem to ask your T1 friends about their CGM and how it works, or where they get their cool patches to keep it adhered to their skin; however, if you’re just meeting someone, it’s best not to immediately ask them about their medical devices. Most of us would prefer if it is not the first thing you notice or learn about us. Get to know us for the cool people we are before you ask us about our medical conditions or devices. If we are strangers, try not to stare, and maybe resist the urge to ask us at all, at least until you know us better.
In all instances, if you do ask someone about their medical device, be as polite as possible about it. Keep in mind that the person does not owe you a response. The decision to wear a medical device in an area that is visible, or the decision to wear clothing that renders the medical device visible, is not actually an invitation for you to ask about it. Often times it’s an issue of “limited real estate” because we only have so many areas on our bodies where we are able to insert these devices, and we have to rotate them accordingly, all the while trying to find ways to make applying these cyborg parts as comfortable and convenient as possible.
I’ve saved the most important for last: If you ask a friend with T1D (or any other condition, for that matter) about their medical devices, be sure to listen to their response. Many of us are really happy to share this kind of thing with our friends, but we might be peeved if you ask us the same questions four or five times. At a certain point, you just need to Google it.
“Do you wear it in the shower?”
When we get in the water, the pump is usually temporarily disconnected from the infusion site. The CGM is waterproof and remains in place when we shower (most CGMs are not removable).
“Does it hurt?”
Neither device normally hurts while it is in us. Inserting both devices can sometimes be painful.
“Does the pump make you normal?”
We are already normal — or at least as normal as anyone else. The pump requires a lot of knowledge and work and is expensive. Even though it is a great technology, we still have to put a whole lot of effort into controlling that technology. Many people have the misconception that the pump is essentially an autopilot for diabetes management; that is by no means true. We are hopeful for the development of an artificial pancreas system which would essentially be capable of autopiloting BG management, which is one reason why investing in T1D research is super important right now.
“Are you sick?”
Not unless I have a cold or something. I don’t consider myself to be “sick” just because I have this condition. Yes, it is a disease, and it really sucks, but many of us are generally in good health and don’t want you to think of us as sick or unwell. NB: There are lots of bodybuilders, professional athletes, famous actors and singers living with type 1!
“So… are you a cyborg?”
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