Invisible to Who?
Type 1 diabetes affects nearly half a million people in the UK. The unseen psychological impact of living with an invisible illness is a side of the condition not well understood.
“They made me learn braille,” says Ray*. “They said I’d be blind by my teens.”
I’ve only met Ray a few minutes earlier. He’s a middle-aged bloke whose teens I’d guess may have taken place some time during the last millennium. As his eyes dart from making conversation with me back to perusing the menu of a pizza restaurant we both find ourselves in on a rainy Monday night in Stratford, East London, I believe he can still see. He's wearing glasses.
Ray is delivering a fairly terrifying-sounding scare story experienced during a hospital stay as a young boy. He recounts this with a matter-of-fact weary humour. It’s not a sob story, just something that happened. But whether he knows it or not, he’s just summed up something larger; a fear of an unavoidable countdown to a date with catastrophe, set early, for those with a life-changing diagnosis during childhood. It’s the kind of fear that can grow to occupy almost your whole psyche in any number of debilitatingly scary directions across a lifetime. But Ray probably does know this because he is a type 1 diabetic, just like me.
We’re gathered with around 15 other people with type 1 diabetes for an informal meal organised by a local hospital. It might sound a bit random. It feels it. But there’s a similar amount of type 1 diabetics in the UK as there are people working for Tesco. Therefore if you're not seeking them out specifically it’s quite easy not to meet another one. Even less helpfully type 1 diabetics don’t wear matching uniforms, so you might not know when you just have. It’s why a local diabetes clinic has organised what feels a bit like Diabetics Anonymous tonight, but, y’know, with names. An impressive arsenal of injection pens occasionally glinting alongside cutlery is the only giveaway of just how many pancreases don’t work around this table.
But nearly all type 1 diabetics live in a strange form of anonymity in a way. Type 1 diabetes is described by most health organisations as an ‘invisible disability’, an ‘invisible illness’ or a ‘hidden disability’. This slippery verbal chicanery – a half-in-half-out shrug of a thing – feels suspiciously fine-tuned to benefit precisely anyone who doesn’t actually have one. Out of sight, out of mind, right? Meanwhile, those who carry any number of time-consuming, often life-sapping and occasionally paralysingly tricky afflictions, are told they’re wearing the disability equivalent of a see-through barely there little number.
Explaining my health condition, type 1 diabetes, can be complicated. Clarifying the effect it can have on a person mentally can feel impossible. Even most media organisations define it using a made-up moniker shortened down to a factually nonexistent condition called simply diabetes. But there is no walking, talking human in the UK or the known universe who has that disease. There are, however, around 400,000 people in the country with type 1 diabetes; a condition that is incurable and for which one must inject insulin multiple times a day. There’s a few other types as well, but the bulk of this problematically grouped collection called ‘diabetes’ is filled out by the 3.8 million people who have type 2 diabetes in the UK. The latter does not commonly require injections and can be alleviated or possibly even reversed by making lifestyle choices. Clinically, factually and experientially, type 1 and type 2 are not the same. It’s like saying both a brain tumour and a hangover involve a sore noggin, so surely ‘headache’ should cover it?
It’s Diabetes Awareness Month this November. Which type? Who cares! But now that we’ve established that all types of diabetic are not only facing their own daily medical Rubik’s cube but also simultaneously battling a phantom made-up version of their disability in the public discourse, I’ll try and lay out some facts about type 1 as briefly as I can – in the name of awareness. I also hope you didn’t make plans.
The pancreas is an organ sitting within your midriff among all the other important ones that people have actually heard of. It creates a hormone called insulin, which is the vital ingredient that allows your body to turn food into energy. That energy can then be distributed around the body via your bloodstream. The term ‘energy’ here signifies the end of the chain that begins at food meeting your mouth. It is basically an interchangeable word for ‘glucose’ or ‘sugar’ because natural sugars are an important part of a healthy diet. If you want to sound even more smart you can call most of these energy sources ‘carbohydrate’. Maintaining how much sugar (or energy or carbs) is in your blood is a fine balancing act made possible by insulin and the pancreas.
Sugars are in everything, not just your Cornetto. A potato has sugar in it (26 grams of carbs). A pint of the black stuff is pretty sweet stuff (around 20 grams of carbs in a Guinness). Pasta might as well be a dessert (70 grams of carbs per serving), and your Cornetto is actually pretty light for what it is: 29 carbs. Every single thing you can eat on this Earth has a form of sugar in it and each food has varying amounts – there are absolutely zero exceptions. Now, imagine your pancreas just breaks one day and stops producing insulin altogether. Congratulations, you are now a type 1 diabetic.
Mine packed up 32 years ago, aged nine, and ever since then my mealtimes have been maths equations. But the brain will never be able to get close to what a pancreas can do. So like all maths tests, there is guesswork and crossing fingers involved, with mixed results.
Too much sugar in your blood? This is called hyperglycemia, or hyper. In this state you'll start to feel sleepy, lethargic, exhausted, and you’ll probably need a wee as your body tries to find ways to flush excess amounts of sugar out, leading to dehydration and an unquenchable thirst. If those sugars stay high for a prolonged amount of time – hours and days, adding up over time to weeks, months and years – you could experience longterm health complications later in life such as blindness, as lectured to a young Ray. There's also the risk of nerve damage and infection, which can lead to potential limb amputation. Organs such as your kidneys can fail too. Type 1 diabetes can shorten your life slow or it can do it quick; if you were to go without insulin completely for more than a couple of days you’ll be close to dead. It means packing for a carefree holiday or weekend break as a type 1 diabetic can feel like double-checking oxygen supplies before a trip to the moon.
If you have too little sugar in the blood, this is called hypoglycemia, or hypo. With the brain now running out of fuel to keep the lights on, things like speech and stringing together coherent thoughts start to suffer. After some hours of this you could fall into a coma and die. The coma bit is admittedly pretty rare but the stumbling around incoherently bit is pretty common. I once found myself so confused in M&S that by the time I ‘came to’ I was being drip-fed Lucozade by a kind member of staff and I had been given my own special chair to sit on in the middle of the aisle while other shoppers curiously edged past. Turns out the checkout lady was a former nurse and post-hypo embarrassment is definitely a thing.
There is no firm understanding of why type 1 diabetes occurs. It’s an autoimmune disorder, which means it’s likely that my own immune system attacked my own pancreas. Cheers bud. Now, the only way to get insulin inside my body is to bring it in from the outside via an injection. Type 1 diabetics have to inject insulin whenever they eat, multiple times a day, and for most of us, that means some quite complex calculations and often unexpected outcomes with blood sugars going up and down significantly all day.
There are now whole smart-tech nutrition start-ups who think this kind of stuff is a pretty big deal (and a highly lucrative one) for anyone interested in pursuing a healthier lifestyle. Companies such as ZOE are cashing in on monitoring the tiny fluctuations in blood sugar levels experienced by the larger population, people whom type 1 diabetics might witheringly class as ‘normies’ who occasionally feel a bit out of sorts. Ambassadors for the brand include entrepreneur Stephen Bartlett and presenter Davina McCall. Stephen thinks he regularly feels a bit lethargic before recording The Diary of a CEO. Davina “scores well” with mozzarella, and both may well be right. I applaud their interest. But I also know that medically their bodies are just functioning exactly as they should do in reaction to different foods (news flash: not feeling brilliant every waking moment of the day does not equal being unhealthy). Are Davina and Stephen wearing life jackets in the paddling pool? There is probably some slightly ugly envy talking here but it comes from knowing that a body with a functioning pancreas is a ride as smooth as a Japanese Bullet Train. I know because I used to have one. Bodies without a pancreas, like mine today, are more like riding the Big Dipper at Blackpool Pleasure Beach; a bit nauseating – occasionally fun – but mostly just quite annoying.
Biology aside, the mental impact of type 1 diabetes is a daily anxiety that those without the condition do not have. Research from Stanford University has suggested that people living with type 1 diabetes make an extra 180 health-related decisions per day compared to someone without. That adds up to a vital health decision about 12 times every hour. Yet the diabetic David Copperfields of this world make the ‘invisible illness’ magically disappear for our audiences with dazzling slight of hand. If we turned the tables, I wonder, how might most people do at their job while contemplating a life-or-death health decision every five minutes? Might they possibly be deemed slightly distractible? Not quite employee of the month? It raises deeper ethical questions; is it fair to make someone whose brain is now doubling as a vital organ choose between giving 110 percent for a pat on the back from the boss, or should they be free to strive for the equally appealing alternative: staying alive? Invisibility is working hard for someone here. Sales this quarter are through the roof. So is my blood sugar.
There is actually a scientific word for listening to our inner bodies: interoception. This is the conscious and subconscious awareness we all have about the shifting sense of how things are feeling within us, which cannot be defined by an outward-facing sense like sight or sound. I would argue that about a solid 80 percent of my life is spent floating around within the ambiguous metrics of interoception – anticipating for the familiar lightheaded diluted feeling spreading across the whole body that accompanies blood sugar going low. A groggy, slightly suffocating staleness accompanies highs. I sit somewhere in the middle of it all, listening, feeling, looking for the signs before the event itself. The optimum healthy middle ground – the ideal for a type 1 diabetic and for any well human – often feels like a fleeting mirage. Not to be trusted.
As you might imagine, this means there can be a lot of introspection and strange secondary guilt wrapped up in the mundane and prosaic as a type 1 diabetic. A supermarket meal deal becomes a deal with the devil. Thousand-yard-stares accompany cake time at the office. I regularly ‘do battle’ with pizza long after the delicious main event due to its notoriously slow-digesting dough, which continues to spike blood sugars upwards for maybe six or seven hours after eating it. A sunny day and hot weather can affect your blood sugars. Stress messes with them, too. Alcohol dips them in your sleep after a big night. The absurdity of all this can feel as deflating as the seriousness of it. Who does battle with pizza? Who picked a fight with the sun? So far I’ve done probably around 80,000 injections to keep things on an even keel. If I keep doing ok at this thing, I guess I might have about 80,000 left to go.
Most doctors only see half of this picture – the numbers and data – rather than observing the very real link between how a person’s mental state inseparably affects their ability to care for themselves. They also are prone to using language such as ‘bad control’ when referring to blood sugars, which feels like a police officer reprimanding a drunk driver. Increasingly, alternatives such as ‘hard to manage’ blood sugars have become a more commonly used phrase, cognisant of that very human quality we all share: being a bit crap at stuff.
If trained doctors are only just beginning to recognise the negative psychological impacts of talking down to and othering those engaged in a daily tussle with their own biology, imagine what it’s like communicating type 1 diabetes to other highly informed pillars of the community, such as a bouncer at a club? A Snickers to a type 1 diabetic is emergency medication. A 500ml bottle of full-fat Coke – resealable, portable, perfect – is our holy elixir. Carrying these things is not just about staying conscious, it’s also about peace of mind. Yet we’re interrogated at festival gates and on pub doors like we’re scheming to open a pop-up bar in the middle of ’Spoons. Among my own experiences, getting a KitKat into a Blanck Mass gig turned into a fully fledged human-rights struggle.
I do get why someone not thinking too hard could find this stuff a head scratcher. We can all see a wheelchair with our own eyes. It would be somewhat frowned upon to confiscate one “because we have chairs inside”. Therefore asking someone to conceptualise an invisible illness and its accompanying existential dread is like asking Dave on the Door to peel back reality and peer into the ones and zeroes of the Matrix. He will have no idea that people with type 1 diabetes are twice as likely to have depression. He can’t know that studies have found people with type 1 diabetes have higher rates of substance use disorder and double the risk of suicide or intentional self-injury. Why would he? Provisions and education regarding the mental health of those with type 1 diabetes are next to nonexistent. Invisible, you might say.
A recent report from Diabetes UK Cymru says, “The evidence that PLWD (people living with diabetes) experience higher levels of psychological distress than people without diabetes is clear and robust.” It continues, “Access to appropriate psychological support for adults living with diabetes in Wales and the wider UK has traditionally been a missing component of NHS care, due in part to the ongoing gaps between physical and psychological health services. The vast majority of practitioners working in generic mental health services will have no expertise in either the assessment or the management of diabetes specific issues.”
If you live in a bigger city like London, there are some emerging opportunities to talk to a therapist more specialised in the condition. Not enough – I had to wait six months – but some. It’s actually how I ended up sharing some experiences with strangers in a pizza restaurant in Stratford.
Speaking of Diabetics Anonymous (with names), Naomi is now chiming in. Naomi mentions that she was wheeled around the amputee ward as a young girl to show what kind of future awaits a young type 1 diabetic who doesn’t control their condition. You might think this sounds almost ludicrously cruel and extreme but there is a breadth of testimony pointing towards a fairly widespread, institutionalised and particularly sadistic form of ‘tough love’ having been part of diabetes diagnosis during the period that myself and others I meet around the table were young. We’re talking the 1990s and onwards, here, not Victorian Britain. And there’s still anecdotal accounts of it going on today.
A recent thread started from a callout on X (formerly Twitter) from the account @DiabeticDadUK asked for some of these scare stories from other type 1 diabetics. A small tsunami of replies exposed a deep well of trauma that arcs across lifetimes for type 1 diabetics and is seldom talked about. These are not only fears grounded in the creeping progression of the disease itself, but from the memories of what essentially amount to threats absorbed directly from medical professionals at a young age. Even amid the less trauma-informed decades of the past, that strategy still feels deranged.
…
“My consultant took me around an amputation ward in 2003 when I was diagnosed to try and scare me into looking after my diabetes”
“Made to wait in a dialysis unit as a teenager”
“Never had the tour but was told every few months (i.e every hospital appointment) that if I did not have perfect control – i.e between 5.1 and 6.9 – then I would go blind and kill myself by the time I was 30. This was done between the ages of 8 and 13. Led to burnout and poor control”
“I was actually shown dialysis patients and amputees. It did 100% effect my diabetes management. It also caused perfectionist tendencies, depression and anxiety bc as we know...t1d makes its own rules”
“My doc made me believe I would not live until the age of 18 and would probably go blind, have amputations, and have kidney failure/dialysis before dying. I have lived twice that long without complications and am 30 years strong with T1D and those docs were so harmful”
“Religiously told I wouldn't live past middle age. Impossible to ever forget those words unfortunately”
…
I too can remember the tones of a matron-like senior expert telling me pointedly that should I not control my diabetes, then blindness, amputation and organ failure was on the cards by perhaps my mid 20s. I was nine. I was also at the time hooked up to machines in an intensive care unit that made my bony, very sick frame look like it was being repossessed by an H.R. Giger painting. Following an ambulance ride and being informed I was probably less than 24 hours away from death, I don’t think a simultaneous prognosis of a future life filled with debilitating horrors was really necessary. It also wasn’t true.
I’m glad I wasn’t wheeled around the amputee ward or made to learn braille but I also wasn’t offered a sliver of mental health care at that age. It’s telling that even today, in an era when therapy is now as common as a morning jog and every podcast includes a BetterHelp promo normalising the importance of having someone to talk to, therapy offered as a part of type 1 diabetes care is still barely off the ground in 2023. Are we not seeing something? Or choosing not to see it? Defining an illness as invisible probably isn’t helping.
My teenage years following diagnosis were quietly and, yes, invisibly, consumed by this imagined date with destiny promised by the unquestionable expertise of doctors. Needless to say I wasn’t always the most fun person at parties. I am clinically diagnosed with catastrophe.
But, party I did. At different times in my life I have sought to numb this projected version of reality that sits in my head in some good ways and some very bad. I’ve chased vices, self-sabotaged and partied like there was no tomorrow – because for years I was assured there absolutely wasn’t one.
So it’s actually been something of a revelation hearing the invisible stories and similar experiences of the Rays, the Naomis, the Diabetic Dads and other type 1 diabetics of this world who have seen life from a viewpoint like mine. Recognition from peers is important and platforms such as Instagram, Twitter and TikTok are alive with a very real, interconnected community of type 1 diabetics sharing knowledge with sincerity and a sense of purpose. These life hacks and learned experiences often bypass the traditional top-down doctor-dictated norms that have helped build essential but also rigidly unspecialised standards in type 1 diabetes care for generations, with health organisations now playing catch-up. A recently devised new framework from the NHS created in late 2022 with input from type 1 diabetics highlights peer support as a crucial piece of the picture. Despite having just used 3,000 or so words to tell the world about some of the darker sides of life with this condition, I would like to think I am also one of those trying to contribute to a more organic conversation.
It is also no understatement to say that today we live in the best time to be a type 1 diabetic in the history of the world. We are now on the cusp of a medical age in which real technological leaps in tackling type 1 diabetes are happening. These include the recent emergence of closed-loop technology that pairs insulin delivery with continuous glucose monitoring, which will probably help reduce a few of those extra 180 decisions each day. Only three years ago I had to make my fingers bleed multiple times a day if I wanted to know what my blood sugar was doing. Now I just scan a painless and seamless sensor resting in my arm with my iPhone. So can Stephen Bartlett and Davina McCall, weirdly.
To make something become seen that a society says is basically not there is a challenge, but perhaps think of it more like this: it’s everywhere. One in five people in the UK are disabled. Eighty percent of those disabilities are hidden. So that’s around a sixth of the population – 10 million people across the nation – who are turning up to work, or to the dinner party, or to the club night, on what might well be their 10,000th or so sick day in a row. An attendance rate that is as remarkable as it is strange and unsettling.
Type 1 diabetes is just one of those hidden disabilities, but it definitely is one. To recognise all of its complexities might be a bit of an ask. To not be able to see it altogether? That’s just a bit convenient.
*names of individuals have been changed