Join Together: Why GBDoc is alive and well....and matters

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.

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.

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

A collage of Day One at #PWDC16 - courtesy of Nichola Davis

We Can Work it out

I freely admit to being conflict-averse. Some would say annoyingly so. There seems to me to be so much discord, conflict, and argument, so many angry words and deeds in this world, that I see no possible benefit to me or to anyone else in picking fights, metaphorical or literal, with anyone, unless absolutely necessary.

Easily said and arguably complacent, I know: I am well aware that I am fortunate in having been born and raised in a stable family, and I enjoyed the benefits of a good education, leading to an enjoyable and safe career. I have also enjoyed the stability of a 38 years-and-counting marriage, blessed with three lovely and loving adult children. I am lucky enough to still live with two of them, and a fab daughter-in-law. I am also blessed with friends of all ages drawn from a life surrounded by good people. 

I therefore perhaps have rather less to be angry about than many in this far-from-perfect world.

However, it seems to me that there is a lot of anger around at the moment, both in a wider world which has become significantly more polarised and tribal in recent years, and also in the social media bubble in which I have chosen to spend some of my time in recent years - the one inhabited by (a very small proportion of the total of) people who live with diabetes.

I spent four days this week largely absent from Twitter and Facebook, having taken a short holiday staying with some old friends who live in deepest Norfolk in a house with unreliable Wi-Fi and intermittent 4G. I didn’t try to take a “digital detox”, but found myself confined to just an occasional look at social media (usually provoked by a notification when out and about), without the means easily to reply or get involved in any prolonged exchanges.

It turns out I inadvertently chose a good few days to take this unplanned break: returning home to a catch-up on my accounts, I saw much hostility, notably the justified but arguably excessive and misdirected anger about Paul Hollywood’s ill-advised “diabetes on a plate” quip from Tuesday’s Great British Bake-Off; a simmering row involving many about the nature and extent of the problem surrounding healthcare professionals’ use of language in talking to and about the people in their care; and finally a poorly-judged advertising campaign by Diabetes UK seeking to draw attention to the dangers posed by some of the potential complications of diabetes.

In all these cases, there is usually some merit in what is said on all sides, some justification for the anger, and some justification for the anger about the anger. What saddens me is the way in which the immediacy of our hyper-connected world causes such rapid, and therefore almost by definition, unreflective responses. And in that sense, I am grateful that my own unplanned absence from social media gave me the chance to sit back, watch and reflect, rather than piling in with my own, probably imperfect, words.

Social media, especially Twitter, is in many ways a megaphone in which those who say most, and say it loudest, can very easily be mistaken for the majority. It gives us all the means to chip in with comments which are potentially “heard” by 1000s, and it’s the easiest thing in the world to join in when you agree with something, even if in a pre-social media world you might have simply noticed, commented to those sitting with you, and moved on with your life. There are clearly many on Twitter who find it very difficult to say nothing, when often to say nothing is the most effective and powerful of all comments.

Then there’s also the pressure to make a post snappy and eye-catching, which inevitably leads to ever more extreme language. I am NOT defending Paul Hollywood, but was what he said really “vile”? Foolish, ill-advised, ignorant, yes, but not maliciously intended to hurt others. Not “vile” or “disgusting” as many chose to say. We all make mistakes and upset people, we all use words carelessly and cause hurt which we then regret: it's part of being human.

The megaphone of Twitter made sure that criticism of Mr Hollywood’s ill-informed quip made it into mainstream media, and quite rightly so, but the real villain of the piece was, as some rightly pointed out, the programme makers. I am sure that there is much left on the cutting room floor after an edition of GBBO or any similar programme is made, and it wouldn’t have taken a PR genius to spot the potential backlash to a diabetes joke.

Then what of the #LanguageMatters debate? I fully recognise that there is a continuing need for care and sensitivity to be used by HCPs in what they say to and about people with diabetes, but in my own experience of living with diabetes, I have never experienced anything beyond amused irritation at what people have said, and to be honest I have got better things to do than spend time calling out every single inappropriate word or expression used about me or others with my condition. In all areas of my life, I mind rather more about peoples’ manner and attitude, rather than what they say. The right words can be said, but the speaker may say them in a manner which betrays dutiful adherence rather than genuine empathy and concern. Just as when someone in a shop wishes me to “have a nice day” I am only impressed if their manner suggests they care about me as an individual.

I wonder how many people with diabetes or other conditions have genuinely been demoralised and demotivated by things said by HCPs? It’s very easy to adopt a reaction, having seen someone else’s, and join in the hue and cry.

It appears that “being nice” is not good enough according to some. But it’s not a bad way to live your life, and personally I think I’ll just try to be nice and hope others do likewise to me, knowing that I can’t please all the people all the time, but at least I tried. And if I’m angry, I’ll say so myself. But don’t hold your breath waiting.

“Life is very short, and there’s no time for fussing and fighting my friend” Lennon and McCartney often said some pretty profound things, so I'll call this post We Can work it Out