This coming week, Saturday, March 7th to be precise, marks the 5th anniversary of the first significant #GBDoc social gathering of people with diabetes, held at the old headquarters of Boots the Chemist in Nottingham. The second one happened a year later, on Saturday February 27th 2016.
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| The Group photo from Day Two of #PWDC16 |
Organised by the then lead organiser of GBDoc, (the online community of people living with diabetes in the UK) this so-called “Un-Conference” was truly an iconic event for many people, myself included.
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| A session at #PWDC16 on diabetes and sport, led by Paul Swann |
The 5th anniversary brings into sharp focus how much has changed over those five years. With so many of the current users of GBDoc being much newer to the group, and the majority of those who pioneered it back in the early days now seldom taking an active part, it is now harder to characterise such a large and diverse group of people as a “community”. The idea of gathering them all in one place for a meet-up is now fanciful, yet the demand for TAD tickets proves that there is a real appetite among people with diabetes to meet each other.
Add to that the inevitable fragmentation that occurs in any group as it expands, the differences of motivation, the clashes of style and personality, and it is no surprise that some now consider the idea of an online-based community to have outlived its usefulness. This is, I think, mistaken, very unfair on those who are trying to keep its sense of entity (especially Paul Sandells and Julie Barcroft and their team who work so hard to promote and organise the weekly tweetchats), and very unfortunate for those who have yet to be diagnosed with diabetes, or to discover the benefits of associating with others living with the condition. More of that later.
First of all, a little history, which may be of interest to those who have discovered the hashtag #GBDoc or the tweetchats more recently:
Diabetes communities, and online diabetes chat are older than many might think: Local support groups have been around for years, and people with diabetes, and parents of children with diabetes, had been talking to each other online, sharing experiences and providing mutual support since the early days of social media. Closed Facebook groups existed, and forums (remember the term chatroom???) gave people a chance to ask and answer questions.
However, GBDoc as a named and identifiable community was formed in 2012 by a gentleman diagnosed with Type One in middle age who was an enthusiast of social media and was seeking ideas and support for living well with diabetes. He chose Twitter because of its open access and simplicity and launched a weekly tweetchat on Wednesdays at 9pm, which quickly grew in popularity as more and more discovered it. It had a website, and its own Twitter account, which is still there, but dormant - @theGBDOC, and this community grew rapidly and was soon imitated in other countries.
The gentleman concerned conducted the chats himself, became known to many and organised the two meet-ups, but unfortunately conflict and controversy arose between him and some members of the community over time. Without ever announcing it, he stepped aside from the de facto leadership of the community in July 2017 and has remained absent from social media ever since.
Nevertheless, the two real-life meet-ups that he organised, in March 2015 and February 2016, were outstandingly successful and life-changing for many - including me. I am far from alone in having made some very close and enduring friendships from those two events and the sense of togetherness from being in a room full of fellow diabetics for the first time was remarkable and unprecedented.
Five years on, we should not just dismiss the old GBDoc like an ill-advised dalliance. It was wonderful for a while and many of us owe something of a “thank you” to the founder of GBDoc for the fact that we know each other.
The #GBDoc label was “rescued” in July 2017 by a small group of people who had been alerted to discontent and misgivings surrounding the founder. These people were trying to save the idea of an identifiable community yet without running it, and as the individual who offered publicly to reveal plans to save the tweetchat and the hashtag, I and the others were accused of trying to “take over”. It was a very uncomfortable time, and I was grateful for the many words of support that eventually came from well-wishers, especially when others involved revealed who they were. We set up the @GBDoctchost account as a result, and it is still used to this day.
So how is #GBDoc now? Why is it that many people - myself included - have drifted away from the tweetchats over time?
Well firstly and most simply, it’s that people move on. Stuff happens: relationships, babies, jobs - life! Moreover, many of us who live with diabetes spend more than enough time thinking about it without wanting to add a sometimes contrived and at times repetitive conversation at an artificially chosen time and place. I myself am often otherwise occupied on a Wednesday evening.
However, we MUST remember that this feeling is a product of time, and that there will always be people new to diabetes who might relish the chance to “chat” with others in a safe, supportive and accessible place, with no need to ask to “join” a group. So we mustn’t knock it just because we don’t have time or have become become bored with it.
Secondly and more contentiously, I think that some conflict and discontent is inevitable over time, often stemming from that most basic and universal of human instincts: jealousy. People don’t like leaders and some resent those who style themselves as advocates. They build them up, then knock them down. Yet a “community” cannot exist without a measure of leadership. A tweetchat needs an organiser, and just because somebody organises doesn’t necessarily mean that he or she is “taking over”. Unfortunately, that is how it is perceived.
Thirdly, there’s the question of sheer size. For my own part, I always start to feel ill at ease in any group that becomes too large and/or too noisy. So I find myself estranged from the idea of a “community”. I don’t actually like the word, because I resist being categorised and labelled. This is why what was rescued in July 2017 was just a hashtag, and it is when people start to regard it as something more than a hashtag that problems start. If an individual or group of individuals become too associated with a community, it assumes too much of their identity, and accusations of cliques inevitably follow. Twitter often looks like a clique, given the way that it can quickly become a private conversation between a few conducted in a public place. It often feels like you’re in a room on your own watching a group of others having fun and laughing loudly. Not their fault but that’s the way it can appear.
A growing community also inevitably becomes fragmented, and dominated by those who say most. Individual differences are inevitable, so it behoves everyone to ensure that they don't regard themselves as guardians of the truth or the “right” way to do anything. Unfortunately, Twitter gives a perfect platform for people to “speak” without thinking. Things that in the past would have been just a matter of self-contained annoyance or private amusement become a public proclamation, with an air of authority and permanence that comes from the strange hybrid of communication that it is - writing as if speaking.
What have I learned from GBDoc? Above all, I have been strongly reminded about difference. Same condition, 100s of ways of handling it:
There will be some who want to hang out with others on social media, but 1000s more who don’t.
There will be some who want to meet up socially with others living with diabetes, but 1000s more who don’t.
There will be some who welcome in the community all types of diabetes, some who don't.
There will be some who want to be all “woe is me” about the burden of life with diabetes, and others who want to be all “no big deal” about it.
There will be some who want to be humorous and witty about it, and others will not find it funny.
There will be some who care passionately about language and terminology, and some who don't give a hoot.
There will be some who want to embrace technology and push the boundaries of innovation, and others who want to keep it simple.
There will be some who welcome the presence of HCPs in the community, and some who want it as a safe place for patients only.
I could go on.
I guess the thing about a diabetes community is that the very randomness of the condition means that as a group it is more diverse than other groups to which we might be attracted. Groups consisting of people with a common interest, hobby or profession will inevitably attract a certain “type”, whereas there is nothing that unifies those with diabetes except diabetes.
And as I am fond of saying, this is a major strength, but strengths are very often also weaknesses. A diverse community with 1000s of personalities, tastes, experiences and opinions is unusual and precious, yet also a potential tinderbox for conflict.
For that very reason, I shall continue to cherish #GBDoc, but avoid over-involvement in every discussion, avoid the temptation to opine about everything, and hope that others will do likewise.
Oh, and in keeping with my tradition (which some probably find really annoying) I need a song title for this post. How about Join Together, one of the Who’s later and lesser known songs, from 1972? Some pertinent words in there:
Do you really think I care
What you eat or what you wear?
Won't you join together with the band
There's a million ways to laugh
Ev'ry one's a path
Come on and join together with the band
You don't have to play
You can follow or lead the way
Oh won't you join together with the band
We don't know where we're going
But the season's right for knowing
Oh won't you join together with the band
It's the singer not the song
That makes the music move along
Oh won't you join together with the band
This is the biggest band you'll find
It's as deep as it is wide
Come on and join together with the band
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| A collage of Day One at #PWDC16 - courtesy of Nichola Davis |
