You can't always get what you want

When I first started posting my thoughts as a blog, back in 2015, I started using song titles - or occasionally lines from song lyrics - as the title for each post. It happened almost by accident when I was writing my very first post, about the then new and very rare FreeStyle Libre blood glucose monitoring device: the words of a song came into my head, and I thought it would make a good title. That post - entitled What's Going On? - is still there, now of course very outdated, but in a very good way.

These days, it's often the other way round: a title or line comes into my brain as a result of something that's happening in the world, and thoughts start to swirl around in such a way that I end up expressing them in writing and usually publishing them on my little corner of the internet. Read on to find out how this title - You can't always get what you want - became a post.

My blog has always been about more than just diabetes, but the condition with which I live, and which has brought me so many friends, opportunities and experiences, remains a recurring theme, not least because the world of diabetes care and treatment has moved on so much over those six years. There's always much to talk about.

This week brought the announcement by NICE of proposed guidelines and a consultation on the future availability of closed loop systems for people living with Type One diabetes in England. It stimulated a frenzy of comment and opinion, ranging from excitement and gratitude to anger and resentment and all stops in between. Once again, I found myself somewhere between amused and dismayed by the speed with which people felt it necessary to broadcast their views to the online world. Not least when the announcement was of proposals, not policy, with an invitation to comment. An invitation to comment: online, privately, and thoughtfully, having read and considered the proposals.

We live in an age of instant and therefore necessarily less than reflective opinion, driven by the platform of social media where so many strive to be heard. By the time I'd read just a few of the torrent of responses, I had already started to feel that I must be a freakish loner in wanting to give the proposals some thought. Until I remembered that those expressing the most strident and immediate views are almost by definition a minority, and that tens of thousands of others are probably unaware of the announcement or too busy living their lives to be able to join the chorus of opinion. 

It’s the negativity that really gets me down. We've been here before, of course: 

I remember a taxi ride back into Central London in September 2017, after being interviewed live on Sky News on the day that FreeStyle Libre was added to the NHS tariff, and reading through dozens of negative comments about that decision, spiced with suggestions that the likes of me or indeed Partha Kar were paid by Abbott to promote this product. Most comments boiled down to “Yes, but what about...”, overlooking the universal truth that all progress, all change for the better, comes in stages, not overnight. Partha repeatedly used the “tip of the spear” analogy to restate his point that this was a marathon not a sprint, and that progress and evidence would generate further change, price reductions and hence wider benefit.

Then this time last year, we had a similar furore over the news that FreeStyle Libre 3 would not be as readily prescribed as Libre 2. Again, the misplaced sense of entitlement, and the consequent rage, was baffling.

After all, we're only 7 years on from the arrival of Libre, and progress has indeed been remarkable. Flash or CGM is now, with one or two shameful exceptions, the norm for people living with T1D in the UK. It has taken just five years from a fortunate few paying £100 a month for Libre 1 to everyone with T1D getting at least Libre 2 or other devices like Dexcom or Libre 3 according to need and at no cost at all to the patient.

So the other day, these wise words, from the Rolling Stones, came into my head:-

You can't always get what you want

You can't always get what you want

You can't always get what you want

But if you try sometime you'll find

You get what you need

Check out the song here - it was actually the B-side of their iconic 1969 hit Honky Tonk Women, but has achieved far greater fame and acclaim over the subsequent half century.

Why these words? Because we now have the prospect of pump with closed loop connection to CGM - a de facto artificial pancreas - for those who need and want it. Do we all want it? Possibly, but not necessarily. Do we all need it? Arguably, but at what cost relative to other demands on diabetes care and the NHS in general? Another huge step forward in diabetes care and treatment, but one that comes with a cost, and therefore with decisions to be made regarding who gets it and who doesn't. Hence the frenzy of excitement this week, but also a disappointing amount of negativity.

Surely, before we all start with the “What abouts” we should pause to reflect, and to keep a sense of proportion, fairness and context to this news. Loop and CGM for more than a favoured few is wonderful news, to be welcomed, celebrated and shared, not least by those who have lived through years of far more primitive methods of insulin delivery and blood glucose monitoring. But we must, now more than ever, remember that this massive improvement to care has a cost, a cost to us all as taxpayers, and that this cost must compete with other growing demands on NHS funds. Assessments of need and decisions, sometimes hard decisions, will have to be made, both theoretically and then in practice: there will be winners and losers. We must surely place need before want, not the other way round.

Take me: I have an Hba1c well below the proposed threshold of 8. I am doing fine on MDI, not least because I have the luxury of being retired and therefore having the time and headspace to devote to keeping my levels in reasonable range.  So whilst I might want management of my diabetes to be easier and more automated, do I need it? Right now, no, I don't, and I'd happily see my £6k of closed loop funding go into the pot to improve diabetes education courses, to increase HCP pay or to speed up cancer diagnosis.

 

I can think of many others living with diabetes whose need is greater than mine. Busy working people with no time to constantly check levels and correct; pregnant women and nursing mothers with 1001 other stresses and strains on mind and body; children and teenagers with raging hormones and lives to live, fun to be had and worries to be addressed; older people with additional mental or physical disabilities or challenges on top of diabetes. The list goes on. I even happen to think that the need of basic flash monitoring for many living with Type Two is greater than my need for a pump and a loop. If we think hard and selflessly, and with due regard to financial realities, the need of others may well be greater than our own want. 

So before I start sabotaging my own blood sugar levels in order to raise my Hba1c to above 8, so as to qualify for a pump, I shall gladly stand back, rejoice in the progress of recent years, thank those who have driven it, and remember that as so often in life, what we need is often considerably less than what we want.

Jagger and Richards wrote some very wise words as well as some of the greatest ever riffs....

Everybody Wants to be a Cat - or maybe not

Everybody wants to be a Cat - a Disney favourite from The Aristocats, loved by successive generations, and rightly so. A great song, a classic animated sequence, but is it true? Does everybody want to be a cat? Of course not, but it works well as a title for some thoughts on how those of us with a hidden medical condition portray it, both in the real world and online.

It is often said that cats are good - too good perhaps - at hiding their symptoms. It’s a survival strategy for a solitary species, as opposed to those who live in groups, herds, packs or other groupings. To show weakness is to encourage predators, such that the cat that walks alone prefers to keep its troubles, pains and discomforts private - a poorly cat will often be found hiding somewhere as if hoping nobody will notice. However, those species which live in groups may make more of a fuss, perhaps even looking for sympathy with the proverbial hangdog expression. We human beings, of course, have a choice, and according to our personality type, we may react to illness or disability by quietly withdrawing from interactions with others, or by making it something about which we are loud and proud, a dominant or even defining part of our persona.

So it is with diabetes, and with the growth of social media-based communities such as #GBDoc, a more visible divide has become apparent between those who portray their diabetes as a defining part of their identity, and in many cases a burden to be borne; and on the other side those who portray it as a nuisance alongside many other nuisances in life, but not something which they will allow to dominate their thoughts, words and deeds.

Social media has brought these contrasting attitudes into clearer focus. Some accounts of people living with diabetes flaunt their condition with pride and defiance, detailing their every success or failure, sometimes railing against the curse of T1D, and maybe raging against society's ignorance, or health care professionals' insensitive ignorance. On Twitter, these people are often those who choose a user name featuring a reference to diabetes and have a profile picture or bio that leaves nobody in any doubt that T1D is a big deal for them.

Other social media accounts of people living with diabetes carry little or no clue to their owner's medical condition. The giveaway is often just whom they follow or friend, or maybe just a passing reference in their bio. Their feed may well be about anything but diabetes, or just an occasional reference to it. Their Twitter name is less likely to reference diabetes.

To pursue the animal analogy, the former group are the diabetes pack animals, and are likely to talk frequently about their diabetes, both in real life and online, whereas the latter group are the solitary creatures, the cats if you like, who prefer to keep their condition private and who consequently seldom draw attention to it. Like most divisions, it’s not binary, and most of us have a nuanced attitude, sometimes wanting the world to know that we live with this damn thing and sometimes wanting nobody to know.  And above all, there are no rights and wrongs - just differences. However, my sense is that nearly all people living with diabetes of any type tend towards one type or the other. So which am I? A cat or a dog?

Well I am very much a cat. No surprise there, given my lifelong love of cats, so this post is about being a cat - hiding an already hidden condition.

Today is my diaversary. It was at 5pm on this day in 1997 that I went to see my GP, alarmed by a sudden recurrence of symptoms after I'd recovered from a week in bed with ‘flu. She had asked me to bring a urine sample and I can still picture her concerned and somewhat puzzled face as she told me that it revealed very high sugar levels, and probably diabetes.

I've told the story many times: it actually took several weeks for me to be diagnosed as Type One; back in 1997 it was still widely believed that Type One very rarely came on in adults: we now know very much otherwise.

Twenty Five years. A quarter century. One third of the average male lifetime. Most significantly for me, more than half of my adult life. So it's a day for much reflection, and indeed a blog post. There's much to think over, and whilst in many ways that dark and chilly December evening when I was told that life-changing news remains very clear in my mind, in other ways it seems like a very different life in a very different world.

Over those twenty five years, my attitude to diabetes has varied, and in particular the level of noise that I make about it, has varied due to circumstances as much as anything, but overall I have always tended towards saying less rather than more. As mentioned above, in diabetes as in all else, I want to be a cat.

Over the first 16 years or so, through very much the peak of my working career, diabetes was firmly in the background of my life, my concerns and my interactions with others. My diagnosis came at the end of a week off work confined to bed with ‘flu, but that was the last day off for sickness between then (1997) and my retirement 20 years later. (Other than routine appointments). So living with Type 1 had no impact whatsoever on my working life, indeed less than four months after diagnosis I was leading a group of 45 teenaged schoolchildren on a week-long school trip to France, as I had done for years before and continued to do for years afterwards. I remained the same busy person that I had been before T1D came to join me on my journey through life, and I often reacted with wry amusement rather than boiling anger as I watched others - notably work colleagues - moan about how busy and tired they were, or how much they were struggling with whatever short-lived ailment was troubling them. Very occasionally, I would drop the T1D bomb into a conversation or situation, as for example when a colleague was planning a day of interviews in which I was involved, and he said to me “It’s going to be a full-on day, with no time for eating” When I gently suggested that I would have an issue with that, he sheepishly remembered and re-jigged the schedule a little.

Outside work and home life, I also avoided diabetes and anything other than strictly necessary talking about it. I joined the British Diabetic Association on diagnosis (sounds so archaic now, but that’s what Diabetes UK was still called back then), and then ignored a series of letter invitations to local group meetings, not least because the subjects of their meetings were always about low-carb eating and getting more exercise, a clear sign that this was predominantly if not exclusively frequented by people living with Type 2.

However, the world of diabetes care and management was on the threshold of very significant change at the time of my diagnosis, and has come a long, long way in those years - as those whose lives with Type 1 predate mine will readily attest. Whilst by 1997 we had already reached the era of disposable pens and needles and electronic blood glucose meters, we were still two decades from the near universal availability of non-invasive glucose monitoring, and indeed the rapid advance in the availability and use of lightweight insulin pumps and closed loop technology. Yet the Rise of the Machines was already under way by the time I joined the ranks of the pancreatically challenged, and although I am not among those who are desperate to have the benefits of an insulin pump rather than MDI, I have from the very start been convinced that the quantum leap has been the ability to measure blood glucose levels without finger pricking: I was one of the earliest adopters of FreeStyle Libre back in 2015, and with Libre 2 now the norm, I am free from the fear of unforeseen hypos which was a genuine worry for me for the first 20 years or so. I was fortunate enough recently to be given a two week trial of Libre 3*, and whilst I remain unconvinced of whether I need or want a full CGM to remind me every minute of every day what my levels are, I can well see that this latest version is a state of the art which will be welcome by many and will sooner or later end up as the norm.

Equally striking when comparing 1997 and 2022 is the impact of the revolutionary advances in connectivity brought about by the internet. The birth of the World Wide Web is rightly quoted as 1992, but it was not until the late 90s that the internet started to reach ordinary homes on a large scale. We got our first internet connected PC in early 1998, but at first the internet was really just a giant online library. Emails were there from the start, but they were really just instant letters. The notion of real-time “conversations” with friends and family across the world would have seemed fanciful, and for me, any sense that ICT and the web would be of any significant connection to my new condition would have seemed very odd.

Yet for me, like many others, it was online connectivity that brought me out of my diabetes closet and connected me for the first time with fellow Type Ones. It’s a story that I have shared before, for example here and I have no hesitation in saying that connecting with others living with Type 1 was a life-changing move, which has brought me connection with 100s, friendship with dozens and a close and lasting bond with a few.

And yes, online diabetes connections and friendships are all about the sharing, and therefore only really of any value if those involved are prepared to talk about their condition, at least in some small way. From around 2013 onwards, I did indeed start talking about diabetes with others, and as a result became aware of the rapid advances in diabetes care and technology that were at that time starting to proliferate.

And yet……

I remain a cat. I remain a man of relatively few words in any setting, real world or online, and especially in the context of diabetes. My regular social media feeds only occasionally feature diabetes content, and my Facebook is a largely diabetes-free space. I sometimes think I should be more vocal, more of an “awareness raiser” or even a so-called advocate, but my heart just isn’t in it. Others clearly feel more strongly about it, and have more to say, whereas for me, the core of my relationship with this lifelong condition is that it is a nuisance, rather than a burden, that I will not allow to take over my life. To rant and rave about it seems to me to be a largely futile exercise, in which I would either be preaching to the converted or risk becoming a bore.

I am enormously grateful to and hugely respectful of those who define their persona so much by diabetes. In so doing, they are being generous and beneficial to others: we would not be nearly so far down the road to accessible diabetes technology for all according to their needs and wishes, nor would we have anything near the levels of camaraderie and peer support that we enjoy, without the efforts of those for whom diabetes is a big deal.

I certainly have no wish or intention to shy away from the diabetes community, indeed I interact with others living with Type 1 every day, and my best friend is a fellow Type 1. Yet outside the world of the diabetes community, I seldom if ever remind others of what I live with. Sometimes to my cost.

So when it comes to sharing my condition, I am a cat, whilst gladly accepting that not everybody wants to be a cat. I conclude this “Silver Diaversary” piece with a sincere thank you to all the individuals and organisations whom I have encountered as a result of that life-changing diagnosis twenty five years ago: healthcare professionals, diabetes charities, medical tech companies and above all diabuddies. I may be a cat, but as all cat lovers know, our feline friends do actually crave and appreciate company and attention. They're sometimes just too stubborn to admit it....

Illustrations? Well it had to be a throwback to the days when "#OfGBDoc" was a thing. This was a collage of cats belonging to GBDdoc folk which I made back in 2017/18. 

I am aware that some of those kitties are no longer with us, so I hope that the memories are warm and not too sad.

*  #ad #sponsored: I was given a FreeStyle Libre 3 sensor free of charge for evaluation purposes. The opinions in this post are my own and were not influenced or reviewed by Abbott.

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

Do you really want to hurt me? Language matters.

I am a linguist by profession: words and language are (or were) the tools of my trade. I have therefore followed with interest the conversation that has developed over the past year or so regarding the use of language in healthcare.

Fundamentally, as Dr Partha Kar pointed out in this recent post, it’s a simple question of good manners. Whether it’s the #HelloMyNameIs campaign so admirably started by and perpetuated in the name of the late Dr Kate Granger or the NHS #LanguageMatters campaign arising from the thoughtless language sometimes used to talk about diabetes, choosing appropriate words is a matter of common courtesy. Our sophisticated power of speech is what distinguishes us from other animals, and words are wonderful things, but can also be very powerful and hurtful weapons.

However, at the risk of clouding an age-old and simple issue of manners, I do feel that the issue of language has become more difficult in our increasingly connected, hyper-communicative and instantly reactive world. And the problem extends well beyond the world of healthcare. At the risk of seeming like an anti-internet reactionary (which I am anything but), I feel that the written language has become so common a currency that it has perhaps become devalued and under-estimated.

The ease and ubiquity of exchanging words with a far larger audience than was possible just a few years ago means that the words that we so readily use have a far greater reach. We have all become potentially influential writers, with the power to persuade and influence but also to hurt far more people than just those around us.

The English language in particular is wonderful, and in many ways deserves to have come to dominate communication across the world in the way it has done. Our language is uniquely rich and subtle, and has the ability to adapt and change at bewildering speed without losing its power or its charm.

Yet perhaps one aspect that requires more thought and attention is the way in which divisions between the spoken and written forms of language have become blurred: thanks to ICT, we all now communicate far more in writing than in the past, using text, social media and email to communicate in a way which just wasn’t possible in the past. Some moan about sloppy language, grammatical errors, and the use of abbreviations, acronyms and emojis as evidence that standards are falling, yet I see some marvellously expressive use of language in the online world.

However, what we are in danger of losing is the ability to distinguish between appropriate registers of language. In effect, we all now write as if we are speaking, which is great, but overlooks the fact that the written word (as seen on the screen of our phone or tablet) has a potentially hurtful permanence that the spoken word does not. We all say things in the heat of the moment which are hurtful, but we can apologise, explain why we did it, then perhaps say the same thing in a gentler way and in so doing start to put the hurt right. But anything written, for example in a Twitter post, stays there in perpetuity, such that it retains the power to cause harm and upset in a way which may not have been intended. If you need proof of the problem, we now have a US President who appears to think it wise to share his impulsive and at times ill-considered thoughts with the world using Twitter. 

The decline of formal registers of language is in some ways commendable: the Plain English Campaign has done much to ensure that ordinary people can understand complex specialised documents and that rich and powerful people and organisations cannot hide behind unnecessarily opaque language. But there is a place for formal and restrained language which has been carefully crafted, considered and reviewed. The sort that was in the past used in letter-writing, dare I say?

Our written language has, quite understandably, become very "chatty". Which is fine in its own way, as long as we don’t overlook the context or the importance of what we are saying. If there are no boundaries to what we say, no conventions and taboos, we risk causing unintended harm, and using words which are far too strong for the context. In particular, swearing has been massively devalued (as happened years ago with the French language), such that it has completely lost its impact yet has retained the power to cause offence and upset. I am not against the use of swear words, but there is no point in having them if they lose the power to add an element of shock and emphasis to what I say. So on the very rare occasions when I do swear, people know I am really annoyed. And I would never swear in writing unless directly and privately addressing trusted friends. The casual use of previously taboo words in the online world has to some extent undermined the power of those words, yet they are still nasty: people say “WTF” without thinking what they are actually saying, and casually insult those of whom they disapprove using slang words for the genitalia of both genders. There was an amusing lack of irony which I saw in a supposedly supportive response to Partha’s post calling for people to be gentler in their use of use of language by someone saying “It's surprisingly simple to not be a dick”. Talk about fighting fire with fire...

So perhaps some of the keyboard warriors out there should remember that although they may think they are just “talking” online, they are in fact writing, and in so doing can cause more hurt than was intended. And just because the object of our anger is a doctor, a politician, a footballer or a celebrity does not mean that he or she has no feelings.

Language matters, and words can hurt: but “Do you really want to hurt me?”

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!

Hi-Ho Silver Lining

Like an essay handed in at the last minute, here is my offering for #DBlogWeek.

It's been a busy week for me at work and at home, so not much time for blogging, but having been invited to a conference in Stockholm for diabetic bloggers, I would feel bad if I let the week designated for DBloggers pass by unmarked by me.

So here are a few, not very original, thoughts arising from my unexpected invitation from Abbott to a be part of a gathering of bloggers from across Europe in Sweden's Summer Night City at the start of June.

I put out a tweet this past week saying that the #GBDOC was "the silver lining of the cloud of diabetes". Unsurprisingly it got some likes and approving comments, which is hardly remarkable - flattery will get you anywhere!

But I do mean it. For about 16 of my 18 years with diabetes, my attitude to the condition was one of "just get on with it". I couldn't be bothered with it, to be honest, and so just did what was necessary to stay well and enable me to live my life much as I always had done. I was pretty successful in so doing, and therefore had no want or need for much support from others. I certainly wasn't very interested in talking about it and had no particular interest in meeting others with the condition.

Nobody, therefore, is more surprised than me to find myself now so involved in the wonderful online-based but very real world of the #GBDOC. Like most of its users, I am unclear how or even when I started to get involved, but I know that I am now a fairly prominent presence in a community of people united by their affliction with an ever-present, incurable, but ultimately manageable condition.

Through this community, I know that at almost any time of day or night, I can say something on Twitter and someone, somewhere will respond in a friendly and positive manner. And if I, or anybody else, tweets anything that remotely suggests unhappiness, discomfort or difficulty, it is certain that others will be quick to offer help, support, advice and good humour - and in saying that, I hope that I am as much a provider of that support as a recipient of it.

This, then, is indeed the silver lining to the cloud that threatens to block out the sun from our lives. I cannot now imagine life without such easy access to friendship and support, and I regard the #GBDOC as a great vindication of the often-maligned online world, in that those I have got to know through the filter of social media have invariably turned out to be just the same in real life as they are online. Many of us have met up in real life, notably at two successful national meet-ups of the #GBDOC, and of course in a couple of weeks' time I will be joining some whom I already know and others whom I don't at a European bloggers' event.

It is truly remarkable where diabetes and Twitter have taken me, and I cannot help but smile when I think that just because I chose to associate with a few fellow sufferers from diabetes, and to sing the praises of a new glucose monitoring device - the FreeStyleLibre - I am about to be flown to a country I have never visited before to meet with people I don't know, or I haven't known for long, to spend a couple of days talking about a condition that I spent sixteen years trying to ignore. 

Such are the serendipitous, and sometimes welcome, twists and turns of life, even at the age of nearly 60. Thanks to diabetes and the #GBDOC, my horizons have broadened, and I have new friends of all ages at a time in life when often the number of friends and contacts tends if anything to decrease. And all because I suffer from an annoying, very dangerous, ever-present and incurable medical condition. For me at least, the cloud of diabetes does indeed have a silver lining for which I am humbly grateful. Hi-ho, Silver Lining !