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.
