You know what I hate? Jokes about diabetes. You know what I hate even more? People who justify their jokes by saying that they were just joking. And more than that? People who pretend to be understanding by declaring that diabetes is a ‘sore subject’ where I’m concerned. In other words, they’re right, and I’m over sensitive.
The thing is – and this goes for all of us, in any situation we don’t have direct experience of – the person with experience is always going to be right. If you’re going through a divorce, only you (and other divorcees) know what that feels like, although it will be different for every individual. If you’ve had a house fire, people who haven’t can’t possibly relate. And when you’re diagnosed with a medical condition, no one else understands what that really means until they’re diagnosed with the same thing. So far, I’m guessing you’re in agreement?
Where there’s blame
Now let’s complicate things. Let’s say you’re buying ice-creams when your child runs out into the road, is hit by a car, and killed. In some ways it’s your fault; you weren’t concentrating, you had your hands full with 99’s, your purse, your bag, and your toddler’s hand. Do you expect others to ridicule you for that? Of course not. They will flock to you with sympathy, declare it a tragedy, and evangelise about your suffering. And rightly so.
Most of you reading this are parents, and can relate to the potential pain of losing a child though, so let’s muddy the waters further. You get liver cancer; you might have contributed to this diagnosis, as you drink a few glasses of wine most weeks, and eat a bacon sandwich at the weekend. You could do with losing half a stone, so maybe that didn’t help. Is it okay then for friends and strangers to decide you brought it on yourself, so you need no sympathy? Of course not.
Diabetes is a killer
I was privy to a thread in a mums group recently where some people were outraged that a local soft play centre had installed a Haribo vending machine. Others weren’t bothered, and said so. One woman began to use the thread as a campaign to convert everyone to a strict, sugar-free diet. She told us that kids who eat sweets are at risk of diabetes, and that no one needs sugar in their diet at all. A couple of parents of diabetic children corrected her (eating sugar doesn’t cause diabetes, and diabetics often need sugar to keep themselves alive).
Then the shit really hit the fan. This woman declared that you can cure diabetes – even type 1, the autoimmune kind – through diet. She posted links to dodgy videos of people claiming to have cured their type 1. The diabetic parents again stepped in: trying to manage type 1 diabetes without insulin will kill you – very quickly.
The lady insisted, and by way of ‘apology’ said that she understood why we were all so upset; it’s clearly a sore subject with us, and we’re bound to be sensitive about it. That was when I saw red. A similar thing happened after Coleen Nolan said on TV that women who were overweight in pregnancy would give birth to diabetic babies. There was uproar, and Kate Garraway apologised the next day – kind of. She said that a lot of us had been angry, they were sorry for any offence caused, and they should have used the terminology that ‘type 1 people insist on.’
In other words, she thought they did nothing wrong, and a bunch of diabetics were just being over-sensitive.
Type 2 diabetes is no joke either
So we have to be careful what we say to a type 1 diabetic, but we can take the piss out type 2’s as much as we like, right? Well, not so much. Let’s go back to that liver cancer scenario. A type 2 diabetic may have contributed to his own condition, but that doesn’t mean it’s any easier to live with. Diabetes of any kind is incredibly difficult to manage. Yes, there are lots of diabetics who don’t manage things very well, but imagine never being able to eat a slice of cake. That’s hard.
Then there are the diabetics for whom a strict diet doesn’t work, and who need insulin injections, like a type 1. Insulin can kill you if you take too much of it. Of course, logically, you’d imagine the doctor prescribes you a dose, you take it, watch what you eat, and all is well. But that’s not how it works. You have to take a different amount of insulin every time you eat, depending on what you’re having. So unless you have the exact same meal three times a day for life, you need to calculate your own doses each time. Imagine taking a medicine that could kill you, and the decisions on how much of it to take are in your hands, not those of a trusted professional.
And to complicate matters further, your body responds differently to insulin every day – and night. Insulin is a hormone, hormones fluctuate, and normal insulin production rises and falls in response. Diabetics don’t have that mechanism, so they have to estimate how much they might need. Too much and they’re ill; too little and – you guessed it – they’re ill. And the worst part is, you’ll never know how much insulin you needed to cover the rest of your hormonal swings until after you’ve taken it and things didn’t work out. Which is most days at different points. It’s not all about what you eat.
So, if you’ve read this far, the next time you hear someone make the diabetes on a plate joke, please tell them what you’ve learned here. And if you ever get the urge to dismiss someone’s medical condition – including diabetes – as irrelevant, or minor, stop yourself. Whatever someone is suffering with – depression, anxiety, arthritis, ME, MS, cancer, or any other condition that you don’t also have – they know more about it than you. If they tell you it’s bad, believe them.
I have to say that the majority of people I’ve talked to about type 1 diabetes have been incredibly understanding. Many readers of this blog have told me how much I’ve educated them about a condition they had no knowledge of. But there is still a tendency to dismiss type 2 diabetes (the one cited as being related to lifestyle, although there are many other contributing factors), and to be derisory about its sufferers. And I have been judged. By friends. Who are no longer friends. But it hurts.
I hate those jokes too. I can’t believe how ignorant and uneducated people are about this. The worst of all are the so called diabetes specialist doctors who don’t understand anything above outdated principles they learned at med school but they are convinced that they do understand. I have to roll my eyes at them. You are so right, people can’t understand a condition unless they have been there, done that.
I think the NHS is starting to recognise this. I was invited to a session with medical students recently to explain how the way they talk to patients affects their ability to manage their lives with the condition. It’s a start at least