Monday 19 December 2022

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.

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