Communicating Your T1D Experience: Tips for Opening Up to Your Support System

July 7, 2023

In episode 70 of the Reclaim Your Rise podcast, 1:1 Coaching Graduate Cory Fowler described his experience of being diagnosed as a senior in high school and then going off to college.

He said, “…on the surface, everyone I feel like thinks that just cuz you have diabetes and that you're standing next to 'em today [means] you have it under control and that you've got it covered and you're a good diabetic… Whereas on the backend, you know, that might not always be the case.”

Can you relate?

Do you feel like the people in your life just assume you’re okay, that you’re a “good” diabetic, or that you have it all under control just because you’re getting through your day to day life?

Here’s the thing… people don’t know what we don’t tell them. If you appear fine and you don’t share what you’re really experiencing, your friends and family can’t know what’s really going on.

We often hear that it’s too overwhelming to explain everything about T1D to those who don’t have it. So here are a few ideas of where to start:

  • Focus on what happens specifically to YOU and your body.
    Don’t overwhelm yourself (or your support squad) with understanding all of the minutiae of diabetes. Instead, start with letting them in on what you have to take into account for specific day to day scenarios, ie your workouts, meals, or even how a stressful day at work or poor night’s sleep impacts your blood sugars.
  • Share about your feelings rather than the blood sugar details.
    People might not understand the science of diabetes, but most can relate to feelings of guilt, shame, anxiety, perfectionism, or fear. Open up about what’s going on in your heart - that’s how you can connect on a deeper level with those around you, even if the don’t know what a carb ratio is.
  • Open up about your needs in a way that they can help meet them.
    Be specific about what you need and how your friends/family can be part of meeting those needs. For example, if you are trying to be more consistent with insulin timing, share with your partner that you need to know when meals are happening 15 minutes in advance so that you can give your insulin. Give them tangible ways that they can support you (without knowing all the ins and outs).

Still feeling misunderstood? There's nothing like the unspoken relatability between fellow type ones. Seek out a T1D community via local meet ups through organizations like JDRF or virtual connections through social media or online forums.