It has been around six years since I took a deep breath and pressed the record button on the video app of my phone. I blundered through an introduction video, deleted it, wrote a script, blundered through that and deleted it. Eventually, I decided on something that was a few minutes long and sent it to my YouTube channel. Of course, nothing happened. It did get a few views! Really... just a few, but that was enough to inspire me to make more and seek out others who live with Type 1 Diabetes. I'm so very glad that I did.
The last six years have been eye opening, jaw dropping, heart wrenching, gut churning, annoying and, most importantly, absolutely wonderful. The good, the bad and the ugly have all visited my social media accounts. The vast majority of the visits have been good and that's why I'm writing this new blog post. The good has had such a profound effect upon my diabetes, my outlook, my social life and my confidence. The good comes in the form of community.
I think it's only fair that I start with GBDoc. You probably knew that was coming! But, what a remarkable community of people and such longevity! GBDoc has been around for far longer than I have in diabetes social media, over a decade apparently. It has had many guises, many volunteers, a few leaders, thousands of members, several platforms, a website, controversy, love, hate and friendship. Sometimes, it feels like Eastenders with boluses - only the acting is better and the story lines are more interesting. Drama aside, the support and information from GBDoc has been incredible. I wonder where I might be in my T1D journey without this community? Where might you be? I suspect much worse off, maybe less knowledgeable, struggling for tech access, more isolated...
...GBDoc isn't the only diabetes community. Different countries have their own communities and that makes perfect sense as healthcare, access to meds and tech, societal differences, etc can differ hugely between nations. Some communities try to cover a global "scene" and that's cool too. From other people, other countries, other values, other uses of language, we can learn a great deal alongside (for me at least) helping to recognise privilege.
Communities are very fluid places. As time passes, people come and go perhaps because they have gained the help and information they need, perhaps they didn't get what they expected, maybe they died! Many reasons can cause the disappearance of an individual from an online community just as many reasons can bring about new faces.
In my six years of community engagement I have gained so many friends - I really couldn't list them all without forgetting a few. Some have been friends for almost the entire six years and I hope they remain so for the rest of our days. Some have drifted away, a few decided to not be friends at all after a while. That seems like very normal human behaviour and I'm quite accepting of it. Community makes friendship easier to develop and blossom. If you're feeling isolated and lonely with your diabetes then the community could be the answer.
Away from being bestie mates with lots of new people, your diabetes could benefit hugely from community engagement. Hybrid Closed Loop (not an artificial pancreas) looks likely to be a hot topic for the years ahead in the UK. Yet, most diabetics are not using that technology right now. That means a lot of learning and understanding is on the horizon for people who may want to try HCL (criteria dependant, naturally). The same was true of Libre, CGMs, Smart Pens and Insulin Pumps - less complex than HCL, perhaps, but the usage experiences of peers have proved invaluable to many.
So, you've got new friends and new tech. Now what? Maybe you struggle with the mental burden of having diabetes? Maybe you've heard of talking therapy? That's exactly what a community can offer. Put your grown up pants on and start talking, tweeting, posting, whatever! You'll be surprised at who understands your issues and reaches out to offer an ear. And it helps! To not feel alone in your struggles can ease your burden even if no immediate solution is found. What is the old saying about a problem shared is a problem halved?
Do you need more? Well, community doesn't always mean serious. I've had some hugely fun days out with my friends from GBDoc, we play quizzes, fantasy football and cruel but funny practical jokes on each other! Other skills are shared via a Stitch Club. Books are read at the same time, films and TV shows via watch-a-longs, hobbies and interests shared and enhanced because of new diabetic friends who just enjoy the same things. Maybe you enjoy gaming? gotcha! Art? gotcha! The list of interests is huge and you'll likely find someone who enjoys the things that you do with no relevance to diabetes apart from being in the wonky pancreas gang.
By the way, serious can also be lovely. Some friendships have developed into more and dating, even marriage, has happened.
If life dealt you a bad hand with diabetes, you can still win the pot if you play your cards right. I'm turning into Bruce Forsyth. Good blog, good blog.
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I don't think I'd maybe still be here - if I had not joined up to the Diabetes Online Community back in 2008. I was burnt, tired of diabetes (at that point I had almost 45 years of being a human dart board). I needed to understand how to use technology that my own health care team didn't approve of (insulin pump? you don't need it). Times have changed, and even with still fighting for coverage for technology in Canada/big blue marble where either we pay out of pocket if we have no $$$ insurance and/or government help. I can't mention enough names like you Mr. Diabetes Dad as to the help I've given to others/visa versa with trying live life to the fullest!
ReplyDeleteThank you so much for the comment, Anna. I very much appreciate your words and your experiences - as I'm certain that many in the DOC do. 😊💙
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