How do we “talk” diabetes with those who mean well but don’t live with the daily ins and outs of management?
Consider the following scenarios that we have all had to address:
- It’s only your second week at work. It is the one day this week you’re “going in” to the office. The occlusion alarm beeps on the pump, no delivery, call tech support, the list goes on.
- OR-you made it off the train just in time to grab a coffee before the first call of the day, only to find out that not only was the meeting moved to being virtual, but your newly inserted CGM on your arm brushed someone else’s giant commuter bag and ripped it off. Grrrrr…..
- What about that grandmother at the first holiday party that’s been in person in 3 years. She makes a comment (insert eyeroll) about “how’s your diabetes, you able to control that now with the pump?”
We all want to go into rage mode right about now…am I right?
The truth is at the end of the day, *most* people like our friends, family, and colleagues, genuinely do care, they just don’t know how to approach the situation. We are now faced with the sticky conundrum of how to respond appropriately without jeopardizing our relationships and our jobs.
This all goes back to roles and boundaries. WE are the captains of our own diabetes team.
WE live with it and complete ALLLL the hundreds of daily tasks and decisions throughout the day. Our role is to manage and to educate others as needed.
THEIR role is to be the supporter, the occasional question asker, etc. It is up to us, the PWD to determine how, when, and how often we discuss diabetes. Here are a few ways to think about being the captain for your diabetes management in discussions with those we encounter day to day be it friend, family or co-worker.
- A captain listens and responds. The first thing we want to do is acknowledge their question or concern. “I really appreciate you asking about it…Thanks so much for your question” In a positive way, this is setting up a clear boundary and puts you in the captain’s chair to guide how you answer their question or provide feedback to a comment.
- A captain can instruct to correct misinformation. It is YOUR diabetes, no one else’s. EVERYONE, I mean everyone, likes to feel like they know someone or something about diabetes, even if it’s gramma’s cat! It is OK to gently correct them. “I was diagnosed when I was in elementary school” I do what I can to manage it but like any chronic illness it takes navigation for a lot of variables.” “What other questions do you have?” You can choose how to respond with appropriate information that might clarify or provide insight in whatever way you want.
- A captain needs time off. You don’t have to talk about it if you’re having an off day, or just don’t feel like it. “I’m having a rough day, I’d rather not talk about diabetes right now.” Let them know you are happy to talk on your terms. You’re setting the boundary here!
- A captain prepares ahead of time. If you can mentally prep yourself and the host of a gathering or party (friend/co-worker/family member), it usually helps. Let them know that you may be bringing a dish to share – one you know works well for your management and that you’d love it if they don’t make a big deal about you not eating something or that you pass on dessert OR actually have dessert and you want to avoid the “Can you eat that” type of comment. You can’t save yourself from all the people, but starting with the host can be helpful.
- A captain plays it Safe. It is important that at least one person you are with knows you have T1D and what to be on the lookout for in case of an emergency. When and how you disclose is up to you. For coworkers, within the first week is what I would recommend. The longer you wait, the more awkward it will become, and chances are “something” related to T1D will be brought up anyway. It may be a beep on your pump, mealtime dosing, a low BG or need to change your technology, etc. This is based on safety so it may be beneficial to share with a few priority co-workers, friends you exercise or go out with and eventually a significant other, if you don’t want to share with everyone. Ideas for sharing might be something such as:
“Hey just wanted to give you a heads up that before we head out to that work dinner tonight, I thought you should know that I have type 1 diabetes. I have been managing it pretty well for several years and most of the time, me and my technology are on top of things, but every now and then I do need to prioritize it or I might need assistance.” You also don’t have to lay it all out there at once for first timers. You can gradually let parts of diabetes become inched into the conversation when you are ready, AND at least a few key people need to know. It is for your safety.
** Legally it is not required for you to disclose your diagnosis in an interview.
Remember – you can’t control someone else’s reaction, you can only control how you respond – that’s what gives you confidence and maintains your diabetes team captain status! You got this! If you don’t know where to start and feel you’d like to discuss with a team that can help you feel confident in sharing your diabetes story or needs with others, let us know.
The team at Integrated Diabetes Services is well-versed in the language of diabetes to give you some stepping stones to Captain your management successfully.
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