Saturday, 21 January 2017

The Boy in The Bubble

There’s been some talk this week on diabetes-themed social media about diabetes-themed social media. That might sound rather like navel-gazing, but in fact the conversation I saw was all about the limitations of social media in supporting people with diabetes, and the risk that those of us who use it a lot fall into the trap of over-estimating the size and scope of the SocMed bubble.

So are Facebook and Twitter here to stay? Are they essentials of patient care and peer support or are those of us who use them just a self-serving clique? Am I, a massive fan of Twitter and the #GBDOC, part of a genuinely valuable and valued group which helps people with diabetes to live well with their condition? Or am I  just an overgown teenager - The Boy in the Bubble?

It’s all about the bubble. I’ve had cause to question whether I’m in a bubble more than once over the past year. The Brexit vote and the Trump victory both seemed so at odds with what virtually everybody to whom I ever speak in the real or online world said that I had to conclude that I really did live in a rather limited world, full of people whose outlook and opinions are very close to my own. Self-evident in many ways: I’m a university-educated baby-boomer retired languages teacher, the child of a Liberal Christian clergyman and a schoolteacher, married to another languages teacher, living on a suburban road in a pleasant and reasonably prosperous market town. Hardly likely to be a Brexiteer or Trump fan, I guess, or to associate with those who are. Those of my generation and younger who were so shocked and dismayed by the Brexit vote should perhaps think what it feels like to be an elderly white Briton, brought up in the afterglow of the Second World War, believing that Britannia does indeed rule the waves, and finding your town swamped with people speaking a strange language. And before we guffaw too much at the election of an atavistic billionaire male chauvinist to the most powerful job on earth, we should perhaps imagine how it feels to be an unemployed factory worker from America’s rust belt, who has seen his work out-sourced to a Mexican factory, where labour is cheaper. I strongly disagree with both of these archetypal voters, yet can see why they might be attracted to such simplistic political solutions as those proffered by UKIP or Trump.

To an extent, we all live in bubbles, in comfort zones populated by people with whom we generally agree on a whole range of things. As a species, we are comfortable with the familiar, and gather together in bubbles of our own choosing, both in our real lives and now also in our online associates. We like to hear others say what we are thinking. But we should be cautious of over-estimating the size of our own bubble.

So what of the “Diabubble”? Well, I’m well and truly in one, but I’m aware that it’s actually pretty small. There are some 4 000 000 diabetics in the UK, and about 400 000 Type Ones. I “know” a few hundred on Twitter (I’m still a Facebook refuser for now) and regularly talk to fewer than 100, and wouldn’t presume to call more than maybe a few dozen “friends”. I’ve met around that number in real life, and found them without exception to be not only exactly like they seem through the filter of 140 character tweets, but also without exception the most delightful, friendly and supportive of friends. An online community linked only by a medical condition which is by its very nature random has led me to a circle of friends who are diverse, yet appear to share most of my core tastes and values.

Nobody is more surprised than me to find myself part of such a bubble. I am not by nature very gregarious, having always been very happy in my own company, yet I am sociable and interested in the lives of others. As a child, and indeed throughout my adult life, I have always tended to be friends with “everyone and no-one”, with no really close friends. When I developed diabetes in the late 90’s, I had no interest in getting to know others with the condition, indeed I actively avoided overtures from local “support groups”. I stumbled upon the #GBDOC sometime in 2013, by accident rather than design, having joined Twitter out of idle curiosity in 2011, and was certainly not seeking either friendship or knowledge about diabetes. Yet it has become a very big part of my life, and some of my diabetic friends have become valued and trusted sources of knowledge and friendship. They are also very good company, true friends both online and when I've met them in the real world, and I hope that the feeling is mutual.

Yet there are far more people with diabetes out there who either don’t know about the online community or don’t want to be part of it. So whilst it’s all very well for those of us who like and use the #gbdoc to pat ourselves on the back for being so knowledgeable and mutually supportive, it would be wrong for us to get carried away and think we speak for all people with diabetes. Just because we are helped, or even amused by tweeting pictures and tales of our (quite literal) ups and downs, doesn’t mean we should expect everyone to. We may be expert patients, but that doesn’t make us experts, and I know that there are people with diabetes out there who get annoyed by the constant stream of what one user colourfully terms "diabollocks".

Should we be evangelists for our community? For me, the instinctive answer is no. I have a deep-seated suspicion of evangelising: I am a practising Christian with a very particular take on faith (look elsewhere on my blog if you really want to know more), but I have no interest in converting others, let alone saving souls. I actively support my childhood football team, Bolton Wanderers, but fully understand that many other people support another team, or think that football is a futile and over-rated pastime. I love cats, but fully recognise that others love dogs. Each to his or her own.

We are all different, but those with whom we most readily associate are more likely to echo our own feelings and opinions. We can, and should, if asked, extol the benefits and advantages of what we like, do and belong to, but we should not assume that there is only one way to do things, only one way to think. And that applies every bit as much to diabetes and healthcare as to anything else. 



PS I haven't a clue what Paul Simon's song The Boy in the Bubble is about. It just satisfies my need to give every post a song title. Good song, though!

6 comments:

  1. Hi Adrian - great reflective blog. You might like this work by Paul Hodgkin and Ben Metz which goes some way to explain why you experience the numbers of connections that you do. It's fascinating and teaches me that networks don't scale.

    Hope you find it interesting. A x

    http://onlinehealthcommunities.org/executive-summary/

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  2. Oh I've just realised - Northerndot is AnnieCoops x

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  3. Thanks. Interestingly, tomorrow (Tues 24th) I am going to meet a researcher from the Health Experiences Research Group at the Nuffield Department of Primary Health Care Science in Oxford for a conversation about using Twitter in healthcare. She picked up some stuff I was saying late last year and asked me to take part. Seems it's a live and growing area of interest. A x

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  4. I love what you've written here! I tread a similar 'non converting' path with my son. He has no interest in the online diabetes community but who knows, one day, in his own time, he might be. If he does, look at all the amazing people like you that I can introduce him to!

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    Replies
    1. Thanks. You're very kind. Ironically,given kids' perceived SocMed addiction, I think the doc is dominated by 20-50 age group.

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  5. Amazing writing, as always. Fantastic read, had be hooked from the get-go.
    A x

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