The T1 diabetic community is unlike any I’ve ever heard of or experienced for any other disease. When I meet another T1 diabetic (called “in the wildâ€), there is an instant connection. I’ve stood for a half hour talking to a stranger after one of us noticed the other wearing an insulin pump or CGM. Many other conversations happen with strangers that are short and quick (“my brother has one of those!â€).
I once heard a pump alarm going off when I was visiting a church. Anyone who has worn an insulin pump can instantly recognize the sound of one, especially if it is the same brand! I wanted so badly to look behind me and figure out who it was. After church I looked around but couldn’t determine who had the pump.
T1 diabetes is a demanding and exhausting disease to live with and meeting someone else who gets it is always refreshing. We have our own language and sub culture. We have our own jokes and memes. Being in the T1 diabetic community helps in what otherwise feels like a world where most have no idea the effort required just to live. Sometimes you just need to talk with someone who gets it.
Every diabetic is different but we can usually categorize ourselves into two camps: those who wear his/her diabetic devices publicly and proudly and those who do everything to hide them. I have joined the camp of wearing mine proudly! Now of course there are always exceptions, if I was going on a job interview I’d hide them as best as possible just because that isn’t the setting to disclose. But for the most part, I wear my pump and CGM proudly and accessorize with stickers and tape. If I’ve got to wear them, I might as well try to enjoy them!
There are great organizations that help T1 diabetics connect with each other. JDRF is the most well known although my experience is they have been better helping families with a newly diagnosed child and don’t do as well reaching adults diagnosed with T1 (like I was). Another great organization is Beyond Type 1, they have a large presence on social media and have multiple tools to help connect T1 diabetics with each other online and in person. There are many T1 diabetic influencers on social media and many advocates for T1 diabetic causes such as affordable insulin.
T1 diabetic camps are popular for kids, pretty much anywhere a kid lives in the US, there will be a camp nearby. Now since I wasn’t T1 as a child, I never went to a summer camp but I’d like to try going as a counselor some day. There are also weekend T1 diabetic camps for adults although not as many.
One of the best things I’ve done to survive my T1 diabetes is to connect with other T1s for advice and community. It is otherwise almost impossible to survive and thrive with this disease! If you know a T1 diabetic that is struggling, the best thing you can do to help is encourage him/her to connect with the diabetic community.