So, you’ve gone through the diagnosis and entered into your “new normal”. Now you’re realizing that most of the people you know don’t know the first thing about T1D. You weren’t given a magical piece of paper connecting you to other T1 families. So how can you find other people who understand what you’re going through?
Finding local groups
The best place to start with local groups is your diabetes care team. Your endo, diabetes nurses, clinic social worker, and anyone else who works at your diabetes clinic should be your go to. See if they know of any groups, get-togethers, or events coming up in your area.
Often, there are playgroups, drink nights, or information sessions available. These are most likely organized informally by T1 families, so it might take some digging to find them.
Another great resource is diabetes organizations like JDRF, Diabetes Canada, or the American Diabetes Association. Look into their programs and events that are near you.
Even if these options aren’t really your thing, it can be really helpful to try it out and meet some other T1 families.
T1D excursions
Local groups aren’t for you? Maybe there’s nothing happening in your small town. Or you just don’t get along with the only other T1 family in your area. Maybe the bigger events will be your thing.
Some of these events will be a bit of a trek, but it’s worth it! Here are a few options to get you started:
Diabetes camps
These camps are great for kids and teens with T1D. Some places offer family camps so that parents and siblings can go to d-camp with their T1D family member. Whether you go to camp with your child, or just meet some other parents at drop-off and pick up, d-camps can introduce you to a lot of new d-families.
Friends for Life
Conferences in the US, the UK, and Canada are put on by Children with Diabetes (CWD) <– check out the list of conferences here. The conferences are for anyone with T1D and their loved ones. It’s one weekend a year, but it’s one weekend you won’t want to miss!
Connected in Motion
CIM is a non-profit organization that connects T1D and outdoor adventure. With hiking, canoeing, and backpacking trips. Basically, it’s a sweet weekend d-camp for adults!
I Challenge Diabetes
Similar to Connected in Motion, ICD is all about T1D and the outdoors. ICD provides age and stage-specific events. A major focus is “teen transitioning” and there are events for everyone from “wee challengers” to adults.
The DOC
Ok, not every place has local T1 stuff going on. And not everyone is into or able to do the big excursions. But there’s one T1 community that ANYONE can find. No matter what you’re into, you’ll find it in the DOC (diabetic online community).
Now, you can find anything from the Diabulimia Helpline to ideas for diabetic alert tattoos and everything in between. If you’re looking for something T1D, the DOC will have the group, blog, or website that is perfect for you. It can be tricky to find them though, so here are a few of my favorites to start you off:
Beyond Type 1
Founded in 2015, Beyond Type 1 is a non-profit organization that uses social media to educate the public about T1D as well as providing support for those living with type 1. They have a website which includes lots of resources and downloadable info sheets, as well as articles on any topic you can think of relating to T1D.
Famously connected with one of its founders, Nick Jonas, Beyond Type 1 also has programs for education, campaigns, and its famous “snail mail club” (to find a T1 pen pal!!) Check out their website, blog, Facebook page and other social media to see if this is a community for you.
T1D Mod Squad
What the heck is a “Mod”? If you have to ask that, please let me introduce you to this very cool non-profit organization, website, and tribe. “Mod” stands for “Mother of diabetic” (don’t worry dads, you’re welcome here too!). Originally created to help connect and support fellow parents of T1 kiddos, the T1D Mod Squad has expanded quite a bit in the last few years. The T1D Mod Squad website includes resources, articles, and T1D gear that you can purchase.
The Facebook group for parents also has several offshoots including a group for adults with T1D, teens with T1, and nurses who support people with T1. All money raised by the T1D Mod Squad goes directly to T1 families in need. No one earns a salary, the donations are spent on things like camps for kids, diabetic alert dogs, and supplies for people who can’t afford them. And they have the only T1D dictionary that I’m aware of: the Modpedia (seriously, click on it. I bet there are T1D words and phrases you haven’t learned yet!)
Type 1 Diabetes Support Group
This is a group that is specific to Facebook. I include it in my list because it’s for ANYONE who has T1D in their lives. Whether you have it, your child has it, or you want to learn more for a friend or family member, this is a place you’ll get loads of information. The Type 1 Diabetes Support Group has people from all over the world and every age and stage of T1D. You can hear stories from people who have had T1D for 50+ years and you might hear about infants being diagnosed. It’s a great place to learn about different things people with T1D go through, new T1D devices and studies being done, and meet people who share your views on T1 management (also people who don’t, and that’s ok!)
Being a group that is largely adult T1s, there is also an offshoot group for T1D and depression/anxiety that is run by the same people. There are some serious emotions that can come along with a T1 diagnosis or when you have been living with it for a long time. If you need a group like this, please join, you are not alone. The creators of the Type 1 Diabetes Support Group have seen this need and thankfully created a group for it.
The Diabetic Journey
The Diabetic Journey is a T1D blog that sprouted up almost overnight! Written by a young mother who has T1D, this small blog quickly turned into a large community. With the option to submit your own story to be published, new articles from different points of view are coming out all the time. Check out their public The Diabetic Journey Facebook page or join the closed The Diabetic Journey Group to ask questions and get support on all topics T1D.
Your T1D Community is out there
Whatever your age, needs, and personality type, there is a T1D community waiting for you. You just have to go find it!
Happy Carb Counting!
~ Leah
Have you found your community? Is it online or in person? What do you love about it? Let us know in the comments and don’t forget to head over to the Carb Counting Mama Facebook page and “like” it for more posts!
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