Always on My Mind: the relentless reality of life with T1D

It’s coming up to my diaversary: December 19^th 1997 was the day on which I went to my GP for a hurriedly-arranged end-of-day appointment to investigate a urinary infection following a very bad dose of ‘flu, only to be told that I had very high blood sugar levels, indicative of diabetes. Within a few weeks, I was inducted into the world of injections, testing and, well, you know the rest…

It’s a story I’ve told more than once before on this blog and on social media, not least at previous diaversaries, so a simple recycling of my diagnosis story is neither appropriate nor necessary here.

However, diaversaries always stimulate reflection, and over the months of reduced activity and increased thinking time brought on by the pandemic, I am increasingly drawn towards the far-from-original narrative that the worst thing about Type One Diabetes is the sheer permanence and omnipresence of it. For me, that means towards a quarter century - over one third of my entire life and over half of my adult life - now lived with the seldom severe, yet ever-present burden of the condition. Just because we don’t look unwell, and just because (in most cases) we don’t constantly go on about it, doesn’t mean that we are fine with it. I still occasionally come across people who think I have “got better” from my unfortunate illness back in 1997.

My T1D Footprint from JDRF

My thoughts on this aspect have been brought on in part by a growing sense of disappointment with the latest portrayal of diabetes in the media. Six months ago a character in the TV soap Coronation Street, 17-year-old Summer Spellman, played by Harriet Bibby was diagnosed with Type One in a story which gained much attention on diabetes social media, and which seemed at the time to be commendably well-researched by the scriptwriters and producers of the long-running soap. Much was made of the fact that the writers and actors had spoken with diabetes charities, medical experts and most importantly people living with Type One to ensure that the diagnosis story was told in a realistic and relatable manner. So far, so good, and well done to Harriet for representing the condition so well - the picture below captures what will be a familiar memory for many readers.

Summer Spellman in hospital after her diagnosis,
June 2021

As a longstanding Corrie fan, I was pleased to see that the scriptwriters had chosen to use diabetes as a storyline. However, whenever diabetes rears its head in this way, I always sense that the reality of living with T1D, and therefore of portraying it in a TV drama, is actually not interesting or dramatic enough in the longer term. The result is that scriptwriters either forget the story altogether, or use it as the basis for something more exciting, but frankly unlikely. Such is TV drama.

Summer is not the first Corrie character to develop T1D, and a previous storyline illustrates the above point rather well: back in 2003, another young woman in the soap, Katy Harris, was also diagnosed with Type One, and like many TV scriptwriters, the then Corrie team saw in our lifelong and potentially fatal condition the potential for good dramatic material, rather than simply demonstrating what thousands of ordinary people live with. Soon after her diagnosis, Katy embarked on an affair with her neighbour Martin Platt, a nurse 20 years her senior who was helping her come to terms with the burden of her condition, but took this help rather too far. As inevitably happens in soaps (where conception seems remarkably easy) she immediately became pregnant and in the mess that ensued she ended up killing her own father and then herself. As you do.

Corrie's previous T1D character, Katy Harris,
with her ill-advised love-interest, nurse Martin Platt

At the time of writing, I am increasingly fearful that Summer’s story is heading for melodrama rather than a less dramatic portrayal of the reality of life with Type One which might be more helpful in raising awareness, but wouldn’t generate viewing figures. Summer’s onset and diagnosis were accurately portrayed, and credit should go to the scriptwriters and to the actors involved for keeping it pretty real. However, at the time of writing (early December 2021), Summer has become the centre of a story about an alleged inappropriate relationship with her neighbour and English teacher Daniel Osbourne, with diabetes reduced to a bit part in the story (Mr Osbourne’s giving her an “energy bar” when her blood sugar was low being used as part of the evidence against him). An unfortunate echo of the Katy storyline, and certainly a distraction from any awareness-raising about diabetes.

Summer with her alleged ill-advised love-interest,
teacher Daniel Osbourne

I shall be interested to see where this one goes: there have been passing hints that Summer is having some concerns over apparent (to her) weight gain, which leaves the door open for a diabulimia storyline, so that may yet be part of the story, and would be a good line to pursue in many ways, given that diabulimia is a hidden and overlooked aspect of the condition, very much known to me because of the battles faced by a good friend of mine who lives with it.

However, what has again been overlooked is the opportunity to portray the often dull omnipresence of diabetes in our lives. I am very much at peace with my diabetes, but if anything ever threatens to drag me down, it is this relentlessness. Most of us, most of the time are not visibly unwell, nor apparently burdened. Yet we are burdened, and if we don’t respond to and deal with that burden every single day, we would very quickly become unwell and, well, die. Diabetes is, as the song says, Always on My Mind (there you go, that’s the title sorted!), and that’s a very difficult reality to portray to others without becoming a bore. It’s not dramatic, it’s seldom tragic, but it’s always there. The first and last thing that I have done every single day since Christmas 1997 is to check my blood sugar level, and in between times, every action, every event, every plan, is made with reference to its potential impact upon my BG level. And as I so often point out, the irony is that it’s the miracle drug to which we owe our survival - insulin - that presents the day-to-day threat to our wellbeing. That’s a very odd thing to have to live with. We don’t monitor and react to the condition as such, we monitor and react to the effects of the drug used to treat the condition. And the administration and monitoring of that miracle drug is entirely in our own hands, day in day out.

If Summer Spellman’s diabetes in 2021 was being accurately portrayed, she would have at least one device visibly attached to her body, she would be seen frequently checking a phone or reader, and either fiddling with a pump or administering an injection in a potentially undignified manner before every meal. She would also quite often be mildly unwell, possibly a little confused, and would need to sit down somewhere and eat jelly babies or similar. To describe all this in writing makes it sound more intrusive than it actually is, but it is the truth. As the Diabetes UK campaign says, diabetes is relentless.

This post is perhaps untypically negative for me, and I am not given to self-pity, so I must conclude on a positive note. I am fortunate, very fortunate: I am fortunate that I live in 2021, not 1921 or any earlier; I am fortunate that I live in a prosperous western country with a publicly funded healthcare system; I am fortunate that I did not endure diabetes as a child or adolescent, when it would have impacted far more upon what I wanted to do; I am fortunate that I am male, and therefore not burdened with the additional impact of monthly hormonal variations on blood sugar, nor the body image issues faced more by women than men; I am fortunate that the relentless march of diabetes technology is reducing the burden, notably of finger prick testing; and above all I am fortunate that I enjoy the support and friendship of the many people from the diabetes community whom I have met and worked with in recent years, both fellow patients and healthcare professionals.

So I’m doing fine with it, and to continue to do so well into old age is my realistic and achievable aim. But yes, diabetes is Always on My Mind, whether it shows or not.

There's always a good song title for any post, and with this one there are two standout versions to share: either the peerless Elvis from 1973 or the wonderful electro-pop reworking by the Pet Shop Boys which famously prevented Fairy Tale of New York from getting the Christmas Number One spot back in 1987. A great song, with two very different interpretations. Click on those links to enjoy either or both versions on Spotify.

Happy Diaversary to me when it comes, and Happy Christmas to everyone.