Friday, 15 December 2017

I'll be There for You

2017 has certainly been a significant year for me. Full retirement and a house move are pretty big events, so the year hasn’t exactly been quiet. Indeed I feel well and truly shaken out of any sense of drift or complacency, and grateful that I’ve been able to make these significant changes in my life at a time of my choosing, and with enough physical and mental energy to embrace them as new challenges rather than feeling “put out to grass”. I am certainly not daunted by having turned 60 - I have a nice sense of entering a new phase of life.

I never planned it this way, but I have to say that my relatively recent discovery of the online diabetes community has been a tremendous help in enabling me to feel re-invigorated and re-energised at this time of my life. I thought it appropriate to post some thoughts on this informal peer support community to mark a notable milestone in my life with Type One diabetes.

It’s twenty years on December 19th since I was diagnosed with the condition (an incorrect diagnosis of Type Two in the first instance - I've told that story here), shortly after the landmark birthday of 40 years. Of course that has to go down as a big negative in my life: developing an incurable, life-changing and potentially life-threatening medical condition at around the halfway point of a typical lifespan is not what anyone would choose for a happy and contented life.

Yet when I think about what I have done this past year alone, it is hard to avoid thinking that my life might now be rather dull without diabetes. I know that there are people out there who resent positivity about diabetes, so let me apologise to them, acknowledge how lucky I am to be able to live well with the condition, and ask that we accept that everyone has their own way of dealing with what happens to them. My own approach is, and always has been, to look for silver linings. And getting to know so many others who have, or live with people who have, diabetes has certainly been a silver lining for me. Some of the greetings I received from diabuddies via Twitter on my 60th birthday were wonderful, so thank you - you know who you are.

In 2017, diabetes has given me opportunities and experiences which have filled the potential void caused by retirement from a busy people-centred job: speaking engagements at #TADtalk2017, at the FreeStyle Libre factory, at the All-Party Parliamentary Group at Westminster and live on Breakfast TV would all have seemed like bizarre dreams a few years ago. And then there’s the real-world meet-ups: this year alone, I have spent lovely times in groups large or small in Oxford, Manchester, Amsterdam, Witney, Bakewell, London and Birmingham with friends from all over the UK and beyond, who were in all cases complete strangers until very recently. And most days I spend time on Twitter in conversation, sometimes serious, sometimes frivolous, with others all over world whose only connection with me is a shared medical condition. My horizons have expanded immeasurably thanks to an annoying and sometimes dangerous medical condition.

Yet it hasn’t been all sweetness and light. Wherever two or three gather together, they will disagree about something, and the diabetes community is no exception to that. It’s human nature, after all. The online community hasn’t been the happiest of places at times this year, and I have found myself the subject of some hostility, in particular over two issues:

Firstly, it became apparent in July that there was significant controversy and lack of confidence surrounding the so-called GBDOC and its founder and hitherto de facto leader. With trust in the brand and its weekly tweetchats severely eroded, I found myself as one of a well-meaning group of people who attempted to guide the community into a more collective and inclusive ownership, rather than being a mouthpiece for one individual. Although our moves were widely accepted, appreciated and recognised they nevertheless caused a degree of resentment in some quarters and unwarranted accusations of a “takeover”. 

Those who felt so threatened by this appeared not to acknowledge that nothing happens in a group large or small without someone taking the initiative, and that taking the initiative does not necessarily imply power grabbing or ego tripping. I hope that the continued existence of a warmly supportive GBDOC community and of weekly tweetchats under the community account @GBdocTChost led by volunteer hosts serves as powerful reassurance to those who feared a takeover. I would like publicly to thank in particular @Jules1315 @type1bri and  @Type1Adventures for their work in ensuring that this happened and continues to happen. Public-spirited, generous-minded and supportive individuals every one of them.

Then secondly came another source of controversy sparked by the decision in September by the NHS to add FreeStyle Libre sensors to the approved tariff for free availability on prescription. Although this development was the result of many months of hard work by groups and individuals, notably our very own NHS Sugar Doc @parthaskar, I was inevitably associated with the decision given my longstanding public endorsement of the Libre, my consequent attendance at events run by its manufacturers Abbott, my speaking to a parliamentary committee about it and my TV appearance on the day of the announcement. Understandably, I again felt the resentment of those unhappy with the decision, and even found myself and others accused, laughably, of “taking payment in little brown envelopes” from the manufacturers.

With some folks fearing that availability of the Libre on prescription would lead to reduced availability of CGM and other diabetes technology, or criticising the fact that Abbott have a monopoly on flash glucose monitoring, or unhappy that NHS availability was leading to delays in supplies for those still self-funding, and valid concerns arising with the use-by dates on sensors, it seemed for a while as if the funded availability of a new device which had been so very helpful to so many, including me, was the work of the Devil himself. And as so often in life, the quietly contented were drowned out by the noisily disgruntled, which must have been disheartening for those who had worked so hard to make it happen. The Libre, like insulin pumps, like CGM, is not for everyone, but at least we are moving towards a situation whereby it should be available to all, regardless of ability to pay. Had social media been around at the time, I am quite sure that some might have been equally angry about the first insulin pens, pumps and meters. Change of any kind is seldom universally welcomed.

Again, however, as time has passed and things settled down, more positive voices have come to the fore, and we reach the year’s end with the online diabetes community very much alive and well. My hope for 2018 and my next 20 years of living with diabetes is that people will come to accept that differences of opinion, factions and groupings are an inevitable part of any group of people. The wonderful thing about the GBDOC is that the very randomness of diabetes produces an online community which is by definition random (albeit including only those who use social media). So it would be a pretty odd, and frankly dull place if we all agreed about everything.

Other groups of which I am part consist of very differing people, some of whom I like a lot, some of whom I am indifferent to, and some of whom I disagree with. But that doesn’t mean I necessarily want or need to criticise those with whom I don't get on; indeed I have massive respect for those whose opinion differs from mine on all sorts of issues. In the real world, I just sit in a different part of the room from those with whom I differ significantly, and the GBDOC rightly consists of people who sit in different corners of the virtual room. I tend to “sit” with those who actually don't talk about diabetes that much. I just like having friends who “get it”, and I enjoy talking to them about other areas of mutual interest, with the comforting feeling that I am hanging out with folk who have such a big thing in common with me. It is a joy to me to share cat pictures or things like this year's #BaublesOfGBDoc with a group.

But we all use #gbdoc in different ways and rightly so: some talk enthusiastically on social media about pumps, ratios, doses, CGMs, closed loop systems etc, and I admire them for it and enjoy their enthusiasm and expertise.  But it’s not for me. Others use social media as an outlet for their woes and frustrations, and whilst I don't tend to do that, I do try to be a virtual shoulder to cry on and greatly value that opportunity. Some, including me, post images of their triumphs and I for one derive great pleasure from seeing other peoples' success. There's a word for it: confelicity. It saddens me when I read suggestions that to do this is selfish because it causes distress to others: nobody forces anyone to be on social media, and there’s always a mute button if others’ way of saying and doing things causes stress or offence.

When push comes to shove, we are all on the same side and it is a constant pleasure to me to see such a diverse group of people being a real source of company, friendship and support to others. It’s what friends do; as the theme song says I’ll be there for you. And I for one am glad that so many others are there for each other and for me. 

Here's to the next 20 years. 

7 comments:

  1. Thank you for sharing Adrian. Always remember there’s more good out there than bad! It’s funny how we always remember those few mean things more than the outpouring of good 😉

    ReplyDelete
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