The Way We Were

“Can it be that it was all so simple then? Or has time re-written every line? And if we had the chance to do it all again, tell me... Would we? Could we?”

Some favourite words of mine, from an oft-performed classic, sung most famously by two of the all-time great voices, Barbra Streisand and Gladys Knight. The latter version, from 1975, is a particular favourite of mine – listen here

There is no doubt that older age brings on wistfulness and nostalgia, although I am always amused that even teenagers are more than ready to reminisce about their younger days. Nostalgia is a universal human trait, hard to resist, yet often futile and even sometimes destructive. A recent short-lived social media craze of looking back at 2016 shows that we all tend to use these round number anniversaries to reminisce. 2016 was quite a year.

Wistful nostalgia certainly welled up in me when I saw a Google Photos memory from 10 years ago of the meet-up of people living with diabetes in Nottingham at the end of February 2016: a reminder that  a full decade has passed since what proved to be the zenith of the original GBDoc, the online community of people living with diabetes. For me, this reminder of what I was doing a decade ago brings an inevitable perspective on the evolution of the online diabetes community.

It was on February 27th 2016 that a gathering known as #PWDC2016 took place at an hotel in Nottingham: the second, and as it turned out final, real-world gathering of the original GBDoc, which had developed and flourished from around 2012, largely on Twitter - back in the days when Twitter was still a pleasant place to be. Does anyone think that the changes since it became X are for the better?

PWDC 2016 - 27th February 2016

GBDoc was, in those early years, a truly lovely community, where many of us for the first time interacted with others living with diabetes. Its founder and de facto leader intended it to be a community for people with all types of diabetes, but in practice it was and still is an overwhelmingly Type One community: it was the very real sense of camaraderie that is felt among those who feel themselves to be victims of the fickle finger of fate that was the driving force which made the community such a success. For all the commendable attempts to seek out common ground between all types of diabetes, it remains the case that for people living with Type One, by far the biggest irritant is when people fail to understand the difference between a randomly occurring autoimmune condition and a condition which is strongly connected to factors of lifestyle and diet. If the truth be told, I don’t feel “stigmatised” by such ignorance; I feel something more akin to an amused sense of superiority. A gathering with fellow Types Ones, whether just one or two others, or a whole roomful, remains a uniquely bonding experience.

So, a look back at 2016 is for me, and for others who were part of that community, a very real dose of nostalgia. Before turning to some thoughts on how that community has evolved, some observations about the risks of over-doing nostalgia:

False nostalgia for the so-called good old days is understandable, and often valid. But it can be at best futile, and at worst destructive. False nostalgia is a driving force for some of the most toxic and destructive trends in contemporary society, and has driven many perfectly well-meaning people to support and even promote populist politicians like Trump and Farage whose appeal is based on blaming all society’s ills on things that are “not like they used to be”. Simplistic solutions to complex problems have landed us, and future generations, with Brexit, Trump, cheap Chinese-made flags tied to lampposts by bits of plastic, and potentially - heaven forbid - a government led by the opportunistic and frankly repulsive Nigel Farage. Nostalgia is fine, but not if it leads to an assumption that the past was somehow better than today. It often wasn’t.

Change is everywhere, always has been and always will be. It is healthy to be open to change, and as I approach my 70’s I remain convinced that the world is still, all in all, a better place than it was when I was born and is indeed an improving place. The bad stuff is just more visible, and the toxic voices are just louder than they used to be.

I therefore try to resist the temptation to portray the GBDoc of 2012-17 as some kind of peer support nirvana. It wasn’t, and in any case it imploded spectacularly a year or so after that gathering in Nottingham when its prime mover lost the confidence of the community which he had done so much to create and promote, amidst accusations of a less than transparent blurring of the boundaries between his community work and his business interests.

Nevertheless, those early years should not be forgotten and dismissed, because what has been achieved through the existence of an identifiable patient community has been truly transformative, and for that alone, we all owe a debt of gratitude.

The GBDoc was never unique, but it certainly quickly evolved some features that have made it a largely benign and beneficial part of the internet. Aside from being commendably blind to background, wealth, age, gender, sexual orientation and whatever else so often divides people, its other main distinguishing feature from those early days was the way in which it brought together in an egalitarian spirit those living with diabetes and those whose job is to care for and support them, either as healthcare professionals, as charities, or as businesses selling diabetes technology. 

The openness and transparency of the early years of Twitter - free from the always problematic issue of designating people as “friends”, which was and still is a significant drawback of its original rival, Facebook - meant that anybody could interact with anybody in a concise and uncommitted manner. In terms of the GBDoc, this meant that healthcare professionals specialising in diabetes, leaders of the diabetes charities and the big pharma companies could far more easily see what those living with the condition were saying and thinking, and if they chose so to do, to interact with them.

Thus, from the earliest days of GBDoc, Partha Kar, originally “just” a consultant at a hospital in Portsmouth, started his journey to becoming the familiar mover and shaker that he is to this day simply by being open to talking online with ordinary people living with diabetes. Other consultants, GPs and DSNs also made themselves known and available and were as a result able much better to understand the needs and wishes of the patient community. The CEOs of the two big charities, Diabetes UK and (then) JDRF also became familiar names and faces in the online community, and tech companies - sometimes rather more obtusely – were able to read the community far better than could ever have been achieved with hand-picked focus groups. The medical technology companies were able to see unfolding in real time users’ reactions as products were launched on the UK market. 

My own personal journey with diabetes through the past decade leaves me feeling genuinely blessed to have got to know people from all these sectors of a genuinely broad online community. Among them are many with whom I remain in regular contact, and with whom I still chat all the time and occasionally meet up, these days often in contexts completely removed from the diabetes sphere. 

However, the community through which I got to know these people has now become fragmented, less active and far less visible. Its original home, Twitter, has lost the characteristics which made it such a fertile place for the community to develop, and whilst there remains, in theory at least, a diabetes online community on its successor ‘X’ and on other social media platforms, it has nothing like the reach or influence that it had a decade ago. Tweetchats - a term which now sounds archaic in the fast-moving world of social media - are still organised by some admirable volunteers, but whereas a decade ago the numbers actively participating, let alone silently lurking, were often many dozens, they are nowadays joined by no more than a handful of enthusiasts. The sense of a large community meeting up online has long since gone and looking at the questions and responses on a recent tweetchat, every topic under the sun has already been covered multiple times.

So, was it all for nothing? 

Was the GBDoc just a supernova, burning brightly then crashing to earth? Absolutely not.

Is there still life in the community? Absolutely, yes.

The GBDoc has evolved, rather than disappeared, and its often-mentioned fragmentation is just a reflection of its success and its consequent size. In those early days, online interaction was still in its relative infancy, and those who discovered fellow Type Ones on the internet were relatively few. It was therefore easy for a group of only a few hundred to become closely integrated, but as the word spread, it grew in numbers and hence in diversity, such that subgroups and so-called cliques inevitably formed. Fragmentation is not necessarily a bad thing; the term clique is a pejorative one easily thrown at those who are part of a group by those who are not. I prefer the more positive “find your tribe” principle, because this is what happened for me and, I suspect, many others as the GBDoc has developed: I got to know a large number of people, some of whom I had a lot in common with, others less so. And over time, I remained more in touch with the former than the latter. One close friendship with a fellow Type One has been for me a true and enduring gift.

Yet the overall community does still exist, and in a variety of ways, it proves its strength and resilience: 

For a start, a far larger community than the original GBDoc is very much present in the background of all the often noisy, crowded and even fractious online spaces, enabling instant connections to be made or re-made. It has the power to support and encourage campaigners and fundraisers, most recently in the case of John Story, the father of tragic Lyla, who died as a result of undiagnosed T1D. 

In so doing, he and others advocating on behalf of others are strongly supported by the diabetes charities, and in particular Breakthrough T1D and Diabetes UK, as well as by healthcare professionals whose connection to, and knowledge of, lived experience is so much greater thanks to over a decade of association with the all-important patient voice. As well as Partha Kar, already mentioned, many other HCPs have engaged with the community in a spirit of humility and learning, and foremost among them is the wonderful DSN Forum team, whose reach extends way beyond their day jobs thanks to an individual and collective mastery of social media.

The aforementioned online chats, facilitated and used by true enthusiasts, continue, and in so doing allow those new to T1D, or indeed just new to its online presence, to benefit from the camaraderie, peer support and information that can be such a huge help in living well with the condition.

And then there’s TAD; I make no apology for leaving till last what is - in my biased view – the best. TAD - Talking About Diabetes - also celebrates a decade anniversary in 2026, having first been held a few weeks after that second GBDoc get-together. 

The concept is simple, and enduringly popular: a real-world gathering of people living with Type One, as well as their friends and families, to hear and share stories of the challenges, successes, the highs and the lows of life with a uniquely frustrating condition. Over the years we have heard stories from people of all ages, some famous, some just ordinary folk, some achieving remarkable things despite their T1D, other just getting by. But all of them sharing a unique bond.

What stands out about TAD - and what makes me most proud to be part of its organising group - is the fact that it happens thanks to a true alliance of healthcare professionals, diabetes charities, tech companies and people with T1D. It was the brainchild of a team of consultants led by Partha Kar, and it thrives and prospers because of the generous sponsorship of the companies who develop, make and sell the kit which sustains us, the support of volunteers from the charities, and above all the commitment of four good friends from the patient community and a consultant diabetologist, Reza Zaidi, who goes way beyond the call of duty.

The sense of shared experience that comes from this once-a-year feeling of not being the odd one out is powerful one and reminds me every year of the truly life changing moments that I experienced a decade ago in Nottingham.

Living with Type One can be a frustrating and often lonely experience, and much has changed for the better in my own 28 years of it. However, it is hard to resist concluding that the pace of that change has accelerated over a timescale which neatly matches the growth of a Type One lived experience community.

So, whilst in some ways, my chosen title for this piece suggests nostalgia for a lost past, in many ways it celebrates the start of a process which is still very much in progress. The community has grown up and abandoned its original home on Twitter but remains a place where those who care more about others than themselves can and do make their own and others’ lives better.

I look forward to seeing many of them on July 11th in London, as we celebrate 10 years of TAD, and rather more than 10 years of the Type One Community. 

Just in case you’re reading this and haven’t heard of TAD, here’s the link to apply for the ballot for a place at TAD2026: 

https://forms.office.com/r/5fGVtc98ew