How tech and tools have enabled my life as a T1D
Looking back to when I was diagnosed with T1D in 1982, it’s staggering how medical science and applications have shaped what is possible for Type-1 Diabetics and their friends, partners and families
My understanding of the possibilities of technology for Type-1 Diabetics (T1Ds) and their families, partners and friends (let’s call them T1Dxes) came into sharp focus at a climbing wall, where I was a competition judge in a regional competition, in 2016. It was a few minutes that captured how a particular piece of applied science had facilitated one family’s participation in sport.
The competition is a good place to start as you consider how improving medical technology over the past 40 years has empowered T1Ds, assuming that my journey is a proxy for that of others. I was diagnosed in 1982, and used to have to urinate over a Clinistix strip to gain any idea of where my blood glucose had been over the previous two hours.
Diabetic technology facilitates participation
One of the competitors in the climbing competition was a girl whose ease, grace and physical lightness on the wall made her a force in the contest.
Her mother explained to me that the white disc on her daughter’s stomach, over which she could pass a digital reading device half the size of an iPhone, was a continuous glucose monitor (CGM).
She was explicit about the benefits. Even as a doctor herself she had been dismayed by the diagnosis of her daughter as a Type-1 Diabetic, which was 25 years after my own back in 1982. (Her trauma was the result of her experiences as a trainee medic caring for geriatric diabetics whose conditions and lives were worsened by a lack of glucose control, she said).
(I’d love to hear your experience of CGM. DM me on Twitter with your perspective).
The device she used was a Freestyle Libre, and it meant that she had to worry less both about hypoglycemia (a state in which the glucose in your blood drops too low as a T1D causing all kinds of malfunctions) at night, and blood glucose control over time. Instead of waking her young daughter to prick her finger when she was worried she was hypo, which before the advent of CGMs was the standard method to check blood sugars, she could use the monitor. (Both experience and research incidentally testify to the impact that hypoglycaemia itself, and fear of it, can have on quality of life).
At the climbing competition, which sparked surges of adrenaline at the same time as it required repeated bouts of intensive effort, she and her daughter could monitor her glucose levels without the need to draw blood. And the Libre tracked and charted her blood glucose levels over time.
Manually entering my glucose in an app on my phone was so crude as to be incomparable. In fact it was really no different in substance from the white notebooks that you used to track blood glucoses prior to the iPhone, which looked as though they came from where they did: a cupboard in a hospital.
On top of that she had a far better appreciation of how her daughter’s control was over time, an approximation of an HbA1c, the measure of glucose attached to red blood cells that is a prime indicator of glucose control for T1Ds.
Sure, there were disadvantages to the Freestyle Libre system at that time, where inaccuracies at lower blood glucose levels had been identified in trials, creating some concerns about its capture of hypoglycemia. Nor did it send an alarm to the device when blood glucose levels were low.
Reading blood glucose digitally beats drawing blood
But I was pricking my fingers ten to 20 times a day to push droplets of blood onto a blood-testing strip. Before and after meals; when I woke up and when I went to bed; when I felt up or down; when I was running; when I was out on my bike; when I was at the climbing wall; when I was looking after my daughter; when I was in bed with my wife. I had been doing the same more or less since diagnosis in 1982, though the means had changed and improved.
‘More’ stemmed from better and more accessible technology and a less fatalistic approach to life, ‘more’ came over time and with age.
‘Less’ was when the process was harder: testing urine before blood glucose strips were prescribed in the UK; trying to match the colours on urine and blood-testing strips; when I was either blasé or fatalistic.
Living with T1D can be characterised as like trying to keep a balloon aloft while performing all the functions that are part of life. There is no reason that you can’t be the UK’s prime minister (Theresa May), model high fashion (Lila Moss), climb Alpine peaks, reach the highest levels of sport (Jay Cutler, former NFL quarterback, and Henry Slade, rugby union centre), or star in McMafia and Happy Valley (actor James Norton).
You can live the fullest of lives, with complete agency, in other words, though part of your focus will inevitably be on keeping the balloon in the air as you do.
‘We made no allowance for you or your diabetes,’ my mom told me recently in a rare moment of reflection, half-pleased and half-regretful as she looked back to my teenage life. I made no allowance for the condition myself. Few others were expected to either.
I would crack on as though I wasn’t a T1D while trying to remain as active as possible (and, as I matured and grew up, manage rather than neglect my condition). I didn’t talk to anyone about it, save when my family might question me from time to time on whether I was hypo or whether I had done my injection.
By comparison with the girl at the climbing wall, when a few years older than her, I’d been to Australia and New Zealand in 1989 to play rugby for six weeks with a once all-conquering school team. (We lost our laurels the year of the the trip to Australia and New Zealand, but that’s another story).
Some things I did (and didn’t) know
These are two things I knew at that time:
to the degree that they knew about my condition at all, people would doubt that I should have been doing what I was, but I needed to ignore them; and
rugby or running sprint distances of 400 metres or less equalled exercise equally a necessity to take on board carbohydrates (my poison of choice before a game or one of our four weekly training session was a Mars bar, sticky, sweet, calorie-and carbohydrate-intense).
Here is a sample of a far larger list of things I didn’t:
that what I was doing was better than the opposite (sitting at home, entrammelled by my condition) but I needed to make accommodations for my condition to keep the balloon aloft, beyond eating Mars bars (on this point it’s worth qualifying the fact that the degree to which I could have made accommodations at all were limited by the fact that the only injections I did were twice-daily shots of a mixture of long- and short-acting insulin);
that the adrenaline of a game itself, and the heat, were pushing my body to release glucose;
and that the ups and downs of my blood glucose, whether doing sport, working out, climbing, riding my bike, backpacking in Scotland, working, living, loving, would be the backdrop of the rest of my life. (I should have felt this more acutely, but I was a kid).
By contrast to her, in 1989, I didn’t even have a blood tester. I still monitored myself with urine tests, thin strips that I cut in half across their longest planes to double the usage I could get.
When I came off the field after the first game in Australia and tested my urine for my glucose levels, the reading was so high that it frightened me. High blood sugars can lead to ketoacidosis, a process by which your body starts to eat itself, an experience I have had and do not wish to revisit.
The management of insulin, carbohydrate and exercise is complex, and the subject of increased research as T1D participation in sport and recognition of the condition increases. On the other side of the world, a generation ago, without the knowledge or tools that now exist it was daunting.
But I was there nonetheless, and enjoying it.
Social media enhances recognition of T1D
It’s hard from the vantage point of 2022 to describe how much more closed the culture was around T1D then, as around other conditions and states. The capacity to share and discuss treatment and the condition that we have now, encapsulated in that doctor-mother’s relationship with her daughter at the climbing wall in 2016, has been enabled by the digitalisation of monitoring and treatment, a significant facet of a society in which technology is advancing with unceasing speed.
Now on social media people close to Type-1 Diabetics (whom I call T1Dxes, because they have their own roles, challenges and responses to living alongside the condition) share the hard yards that they, their friends, their kids, their families, their lovers do as T1Ds. Their medics have access to their blood-glucose records in a way that makes those scrawled notes that I once handed the consultant remarkable only for their incompleteness and bias at best, and mendacity at worst. I often scrawled them on the bus on my way to an appointment to give me and the doctor something to talk about. (I’ve been fired twice in my life, once by a GP in Oxford, who struck me off his list when I was a student. And more recently by my driving instructor).
Access to information in the pre-digital era was mediated through medical professionals and specialist magazines catering to Type-1 Diabetics, which contained too many ads for ill-tasting diabetic products and flowery lay-outs for my taste.
As I recall neither medical professionals nor anybody else talked about the psychology and experience of being a T1D, or how to navigate it. To me, the recognition of the weight of the condition in latter years seems comparable to the way in which pain is seen as something that needs to be treated in itself, not merely as an adjunct to a medical condition.
The balloon simile had not been coined; nor was there much explicit recognition of the skill, resilience and dedication that living with the condition requires, whether with feelings of failure, success or the dizziness that comes as you swing from one to the other.
Had Type-1 Diabetes been characterised as anything when I was growing up with it, it might have been a 50-kilo explosive that you strapped to your body: manageable if you were an elephant, less so a swallow.
There were no adjustment doses, no tools or techniques to match insulin to carbohydrates. No insulin pens or glucose monitors. No data-powered artificial pancreases that scientist-diabetics were hacking together for themselves. No automatic upload of glucose results from those privileged to have the technology to their doctors’ systems.
These developments have changed the outlook for T1Ds by improving their agency and better enabling them to keep the balloon aloft. You can punt it higher for longer and reduce the time taken for each fingertip touch; keep on it and the desperate lunges in which you smash the balloon into the floor fall in number.
A good problem: digitalisation and transition of T1D care
Yet when I think back on my 18-year-old self I do wonder what the effect would have been had my family been monitoring and reading my blood glucose when I was a teenager. It might have been beneficial to me and my health had they then been able to see my blood glucose rising and falling and help me stabilise it.
But what would that have done for my capacity to manage, as best I could, my own condition? In a simplistic view of an optimal situation it might look as though we were keeping the balloon aloft together, but neither the process of handing over control, nor the establishment of my agency, would have been simple.
The lack of continuous glucose monitoring after my diagnosis in the 1980s was probably a blessing of sorts to my parents, enabling them to let me go and get on with life. It’s different now, but the agency I had then (for good and ill) is still with me now and I hope always will be.
Because barring a medical miracle to match or surpass that of the creation of injectable insulin itself, my T1D will always be with me.
But fortunate and privileged as I am (not least in being in the UK, where access to insulin is free to all, unlike in the US), when I count the ways in which I have lived till now (riding Alpine climbs, playing rugby as a kid, raving, navigating Scotland’s mountains on trips of multiple days, having a family, running the Yorkshire Three Peaks, travelling across the world as part of a successful career as a business editor) there is little the condition has ever flat-out stopped me from doing, hard as it has been at times to keep the balloon aloft.
I am inspired by the experiences of people living with T1D or T1Dx, and interested in the parts that are beyond and beside the medical condition itself. Join me here on Twitter.
