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!

Ch-Ch-Changes: Thoughts for New Year

Turn and the face the change: a very apt title from the wonderful back catalogue left by David Bowie, one of the many unexpected and premature deaths that seem to have characterised 2016.

Many have branded 2016 as the “worst year ever”, citing in particular the Brexit vote and its aftermath, the election of Donald Trump to the US Presidency, multiple terrorist atrocities and the aforementioned celebrity deaths.

It is very easy to join in with this chorus of negativity, but two points come to my mind: firstly, I think that many of those who talk doom and gloom should perhaps consider swapping their lives in our comfortable Western democracies in 2016 with those of people in many other parts of our contemporary world, or indeed with those of British people in, say 1940 or 1916, before declaring their lives to be quite so shitty. However bad things seem, there are far worse places to live and far worse eras to live in. Secondly, I think we should be very careful about seeing everything through the filter of the hyper-connected and over-reactive world in which we live, rather than through our own response.  In other words, are we over-influenced by a collective response to what happens, rather than just forming our own reaction?

My memory of the elections of Margaret Thatcher as UK Prime Minister or Ronald Reagan to the Presidency in 1980 is that these were accompanied by similar ridicule, bewilderment and hysteria about imminent Armageddon, but there was not the same opportunity for mass reaction, and so that reaction was more muted, confined mainly to the traditional media, with no chance for hashtags and social media campaigns.

Yes, we may well feel that both of those figures of hate and fun from the 1980s inflicted much harm upon their respective countries and indeed the wider world, but we all survived. And we have all survived 2016, and will no doubt survive 2017 and beyond, albeit with plenty of hurt and sorrow along the way.

If 2016 can teach us two things, it is that nothing is more inevitable than change, and that we do not always get what we want. Many of us, myself included, are deeply unhappy and apprehensive about the changes that 2016 has brought about, just as we all get upset in our daily lives about all sorts of things: the new boss’s policies at work, refereeing decisions in football, winners of Strictly Come Dancing or Britain’s Got Talent - whatever may upset us at any given moment. Life isn’t fair, shit happens, and we don’t always agree with those who have power over us, but I always feel that we spend too much time wishing that things were otherwise. Turn and face the change.

I faced my own change in 2016, retiring from full-time work and in particular from a role which I, and only I, had undertaken for 25 years, as Head of Sixth Form, a position of considerable influence over the lives of the young people with whom I worked. Of course I miss it, and as I still work in the same school, I watch my old job being done by others, in a different way.

But as one door closes, others are opening. Over the past two years, I have become increasingly involved in the community of my fellow Type One Diabetics, and have found new opportunities, new friendships and new experiences which provide me with fresh challenges for 2017 and beyond. I hope to have the opportunity to help others, be it online or face-to-face, to live and flourish as I have done with a condition which is difficult yet manageable. I hope to use the skills and experience gained in a lifetime of teaching in new and different ways. Accepting that I am getting older and not in perfect health, I hope to have a life which is less physically demanding yet still busy.

My life is changing, the world is changing. Let’s stop moaning and get on with it.

Happy New Year!