I looked at the paper in my hand and the two email addresses I had been given. This world was new to me, but why would I contact people I had never met just because their children had the same disease as mine? The doctor had said we might want to meet up with them. They would be supportive. They would understand what we were going through. But I had family and friends. We had a support system. Why would I ever need these email addresses?
But our support system wasn’t a T1D support system.
It’s hard not to alienate yourself when you’re overwhelmed and no one understands why.
When you miss important birthdays or dance recitals because you’re not yet comfortable “SWAGGING” and injecting in public. And they get mad because you’re making everything about your child on their important days. Even though you desperately want to attend, but can’t fathom how you’d manage it.
When you listen to your friends with newborns complain about how tired they are and you feel… jealous. You know that it’s a phase for them. After a few months or even a couple of years, they’ll get their sleep back. At the same time, you know that you’ll be up every night, until your child moves out, checking that they’re still alive and treating life-threatening highs and lows. And even after they move out, that task will not stop, it will just be passed on to your child.
When small things bring you back to diagnosis day. A picture of your child before they were diagnosed. An item of clothing they used to wear. The toy you bought them for being so brave and letting you give them their life-saving injections. And you completely break down at the mere thought of these items.
It didn’t take long for me to realize that no one understood. Even the people closest to us who truly wanted to help.
So, I emailed the complete strangers on the piece of paper
I told them that our son had recently been diagnosed with T1D. And that the clinic had suggested getting in touch with them.
They had a playgroup set up. They met with local families once a month so the kids could play and the parents could talk.
I’m not sure how long the group had been running, but we only made it to a couple of meetings before one of the ladies moved away and it kind of fizzled out.
But those meetings changed everything for me.
They opened up a door.
A door to a whole new world: the diabetes community.
A door to other people who understood what we were going through. People who had been where we were. People who knew about things that we hadn’t even thought about.
As someone who didn’t even know what T1D was before my son was diagnosed, I had to find more doors to that world. He was (and still is) the only child in our family, in his daycare, and in his school who has T1D.
I need this community… and so does he.
Then I found the DOC (Diabetic Online Community)
I often see people who join T1D groups while their child is still in the hospital. Right from day one.
I was not one of those people.
It didn’t occur to me that social media would be a good place to turn with my son’s diagnosis.
I barely used a cell phone, social media was a place to play games (ok, it still is), and I didn’t search out blogs or vlogs or anything like that to learn about T1D.
I muddled through, mostly on my own, for years.
Then, one day, it clicked. I found the DOC and it was life changing!
I found groups for parents, local groups, groups for specific ages. For depression, for diabulimia, for T1 tattoos. Places to find info on exercise and T1D, drinking and T1D, LIFE and T1D.
Any aspect of T1D you are looking for, someone has a group for it, a blog for it, or a YouTube channel for it.
The best part? They all understand.
They don’t ask when you’re going to get control over your child’s diabetes. Because they know there is no such thing as control when it comes to T1D.
They don’t tell you to try miracle cures… cinnamon… okra… Plexus… anyone? No?
They don’t make you feel like you’re a helicopter parent because you’re trying to keep your child alive. You didn’t sleep last night because you were dealing with stubborn lows? Me too! You have to go on every field trip so you can monitor your child’s blood sugar and activity levels? I’m right there with you!
Find your community
Whether it’s locals who meet up in person or an online group that clicks with your personality.
Whether you post questions multiple times a day or you just read through other questions and answers without ever commenting.
Finding your community may not give you better T1D management, but I truly believe it’s the first step.
You will find information about devices and new technology, T1D research projects and clinical trials, and different T1D management styles that may work better for you than what you’re currently doing.
Whatever you need, your T1D community is out there waiting for you to find it.
Happy Carb Counting!!
~ Leah
I’m obsessed with T1D groups and websites! What is your favorite one? Let us know in the comments!! And don’t forget to head over to the Carb Counting Mama Facebook page and “like” it to see more T1D posts.
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