Since I am choosing my topic today, I'm going to give a nod to the April Blog Carnival topic from Diabetes Social Media Advocacy, or as we lovingly call it, DSMA.
Describe your ideal diabetes “support group”? What would you discuss?
I attend a lot of support groups...once.
I know that there are type 1 adults in the Dallas metroplex. I run into them occasionally. They go to my doctor, they show up at the odd JDRF event, and I am occasionally contacted by my local Omnipod reps to meet with one occasionally through my consulting agreement with Insulet Corp. I've met some cool women - Carrie, Patra, Cheri, Cindy, Angela.
But when I try out a new support group, instead I usually find myself in a room of people who know a LOT less than I do. Who manage their diabetes a lot like I used to or a lot like our 'ancestors' a decade ago. I meet grumpy old men who stand by their particular treatment or brand of pump. I don't meet anyone like the patient advocates I know from the online community.
What I get from the DOC (Diabetes Online Community) is fantabulous. It's available 24 hours a day and all I have to do is pose a question, start a thread, use a hashtag...and real human beings with honest experiences are there on the other side.
But if my face-to-face meetups with some of those folks have taught me anything, it's that there is something magical about the warmth of a hug from Scott Strange, the sound of Sara Nicastro's laughter, the taste of Bob Pederson's salsa.
These moments where you get to come face to face with people who love you and barely know you. I've written about these people and these moments before.
So I already know what I'd love my local support group to feel like. What it would require to provide me with the support I need to get through rough patches. What I'm not getting from the groups I've been to here.
Accessible. I've tried to get involved with several groups on a local level, but everyone's work schedules and geographic location make regular meetings within a drivable distance extremely challenging.
Sure I'll meet you at that coffee shop. Oh, it's an hour away and I need a sitter for my kids and I get to drive in rush hour? Oh joy!
Most people here don't seem committed enough for a regularly scheduled event.
Knowledgeable. This is going to make me sound snotty - which I am - but I would get more out of local support groups if I felt I wasn't constantly educating many of the other participants.
Okay, yes, that's my problem. I could just shut up (I'd need to sit on my hands with a gag in my mouth.) I do so enjoy having an opinion on everything. I'm not a licensed diabetes educator, but I have an uncontrollable urge to correct misinformation when I hear it. And as they say, maybe in the land of the blind, the one-eyed man is king.
When I get together with other patient bloggers - people with the same or more experience as I have - I feel like we are a bunch of equals. The one-eyed man finds his cyclops village. (oh, the sentences you never expect to type)
Listen, I LOVE sharing what I've learned - especially since I learned most of it recently after a long battle with ignorance, but going to these meetings, I often feel like I offer support that I don't get in return.
To truly find support, I need peers.
Light-hearted. My support group would look exactly like the living room at Jess's house when we went to Kansas City for Simonpalooza.
Spouses chatting it up in the kitchen. A table full of homemade snacks. Couches and chairs full of laughing friends. Becca the alert dog sleeping discretely under a bench.
And my toddler (butt in the air, far left) overturning unmanned red Solo cups of diet soda.
This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/april-dsma-blog-carnival-2/
I'm sorry to hear your local support groups haven't been great experiences for you. :( But I hope you can find a way to create a group that equals the DOC!! Maybe it could just be meeting for dinner every so often with those cool ladies you met through Insulet? Best of luck to you!!
ReplyDeleteFirst of all, WOO HOO! I got a shout-out! :D
ReplyDeleteSecond, I can't tell you how many times I started to send you a message to see if you were up to hanging out. But I didn't want to seem like a stalker & I knew you were ultra busy. And my anemia keeps me so tired all the time that I wasn't sure when I'd be up for it.
Also, I need to stow away in your luggage next time you go to a meet up. I'm so jealous! :D
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ReplyDeleteYes, thanks for the shout out :-) While I can't possibly match your knowledge on diabetes, I like to think I add something to the table with my silly wit, good looks and sarcastic demeanor *grin*
ReplyDeletei'm so happy you were able to come in october! and the DOC is magical.
ReplyDeletei do hope you can find some local t1s to connect with. sometimes i worry about scaring people away with my enthusiasm...
Finding and connecting with those local Type 1s for D-meetups can be a challenge. We are doing it here in Indy, trying to get around the "support group" idea and just hanging out with fellow PWDs and friends. I have negative images in my mind of support groups, with people sitting around just complaining and not really connecting. And so I like the idea of making it more of a meetup that might somehow mirror what the DOC represents!
ReplyDeleteHmm, the sound of my laughter...
ReplyDeleteCan I tell that to all the people who tell me that I'm just too loud?! :)