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Opinion – we still know nothing about diabetes

Over 4.9 million people in the UK have diabetes, with a further 13.6 million individuals at risk of getting type 2 diabetes and another 850,000 left undiagnosed. Isn’t it time we collectively learned about the condition?

It’s been a year since I was diagnosed with type 1 diabetes, but there are still days when I forget that I have the condition. The knowledge and the experience of what having it is fully like seeped in very slowly over the past few months, perhaps because of how little guidance I was given throughout.

Most of what I learnt, I learnt alone. The rest I picked up on social media and in podcasts, created by fellow type 1 diabetics who also know how lonely it can be discovering this disease alone.

Although the internet was a wonderful place for me, it also directed me to a lot of information that, frankly, was misleading and largely untrue. The internet is home to a vast amount of myths about diabetes, such as how large amounts of exercise and a carb-free diet will prevent anyone and everyone from getting type 1 diabetes.

As someone who lived with a strict eating disorder and addiction to exercise for years, I knew this information could not possibly be true. But that’s not the issue.

The internet’s sea of myths is a reflection of how little the general public knows about diabetes. It can be funny in some instances, but in others it could ultimately put someone’s life in danger.

Diabetes: the good or the bad type?

Ben Goulding, 31, was diagnosed with type 1 diabetes seven years ago. He is one of the many who feels his condition is widely misunderstood.

He recounts times when members of the public, friends and even his own family have previously made comments and asked questions about his disease, including whether it was caused by eating a lot of sugar as a child, or whether diabetes is ‘self-inflicted’.

Goulding tells me he was once asked whether type 1 is ‘the good type or the bad type’ – a label that often wrongly distinguishes type 1 from type 2, and which adds to the stigma that many type 2 diabetics are subject to because of its common association with obesity and older age.

‘It can make me feel a little frustrated when people tell me what they think I can or can’t eat or offer certain treats,’ he adds. ‘Although I’ve become quite used to it so I just let it go.’

And misinformed comments are normally made with good intent so a friendly correction is usually the best remedy, he adds.

One time, Goulding was stopped by a security guard at his local supermarket. It was only after he walked through the door scanners without his shopping that he realised it was his continuous glucose monitor – a device that provides blood sugar data to its user in real time – that was setting it off.

‘The security guard did not understand and watched on as I waved my seemingly bare arm through the scanner,’ he says.

Perhaps the most alarming question Goulding has been asked, however, is whether he should be injected with insulin if he has an episode of hypoglycaemia – low blood sugar – and faints.

Insulin is the last thing that a diabetic should be injected with to treat low blood sugar. It will only worsen an episode of hypoglycaemia, potentially causing the individual to go into insulin shock.

Such questions are often harmless and come from a place of curiosity and care. But they show that, without education, we are unintentionally putting a lot of people in danger.

Low blood sugar, in its most severe forms, can lead to death. It must be treated immediately with fast-acting glucose, like jelly baby sweets or a coca cola. Meanwhile, if a person has fainted they must be injected with glucagon – a medicine used to treat emergency cases of hypoglycaemia.

Engrained in the NHS

Goulding is the founder and managing director of Workout For Less, a sports and fitness retailer in Buckinghamshire.

He tells me he was lucky to have a GP that was quick to diagnose his symptoms as type 1 – and not type 2 – and has a ‘fantastic’ team of diabetic specialist nurses and consultants that he has been working with ever since.

Fortunately, in the UK, type 1 diabetics are given free prescriptions and have access to teams of diabetes nurses and psychiatrists that help people transition into this new life after their diagnosis. And if you’re lucky like Goulding, your GP will know exactly how to help out with any further day-to-day concerns, as well as approve your repeat medication.

Unfortunately, my GP does not. The first time she met me after my official diagnosis, she tried to prescribe me with cholesterol tablets, which are used to treat type 2 diabetics, or type 1 diabetics that have had the condition over a decade and have a history of kidney damage. Those over the age of 40 are also eligible for the medication.

‘I read about them on the Internet the other day,’ I remember her saying. ‘They work really well and I think you should start taking them immediately.’

I interrupted her then, telling her that there was no need. I was on insulin and that was all I needed. But she carried on, before urging me to explain why I needed insulin and why I needed so much of it every month.

I remember feeling shocked. Not only was this medical professional trying to give me something that was clearly not necessary and potentially damaging, but she was questioning my need for a drug that my body cannot function without.

She only changed her mind after ringing a local pharmacy to ‘make sure I really needed insulin’ and not cholesterol tablets, which they of course confirmed.

Goulding notes that this is a common mistake.

‘Type 1 diabetes is a lot less common than type 2 so, unfortunately it is often confused,’ he says. The media often adds to this confusion, by grouping the diseases under one umbrella word, so the public should not be blamed for being misinformed, he adds.

But if our GPs are getting it wrong too, there is a serious problem engrained in the healthcare system.

Goulding says it is important that non-specialist GPs and nurses are aware of early symptoms in order to diagnose the condition as well as being aware of complications that a type 1 diabetic may experience to prevent the underlying cause from being ignored.

Type 1 diabetics are often misdiagnosed as having type 2 diabetes because of the symptoms that the two conditions have in common, but this can be detrimental to someone whose pancreas no longer functions.

‘Mismanaging type 1 diabetes can have devastating consequences in the long-term,’ Goulding adds.

This issue could be fixed through more targeted type 1 diabetes training along with ongoing refresher training to GPs and nurses, he says. ‘Initial medical training should also place greater emphasis on type 1.’

Scientists are yet to discover how type 1 diabetes is caused, as well as how it can be cured. Meanwhile, new tech and concepts are being created every day to help support those who live with the condition. Continuously updated medical training would ensure medical professionals stay in the know about how to give their patients the most normal life possible while they await a cure.

So where should education start?

Goulding believes keeping the type 1 diabetes conversation going both online and offline, and through charities, is key.

Diabetics talking about the condition themselves can help break through the wall of misinformation – whether that is to friends and colleagues or on blogs and social media. Family members who live with diabetics can help spread awareness too by resharing information in their own separate communities, Goulding says.

On a more significant scale, he notes, members of the type 1 community need to push back and challenge media outlets when they misrepresent, confuse or fail to differentiate between type 1 and type 2 diabetes so that journalists can more accurately report diabetes stories.

Breaking through the wall of misinformation that encourages our doctors to prescribe the wrong information and endangers lives is not completely in diabetics’ hands though. After all, we only make up 7% of the UK population. There needs to be a systematic change and it needs to begin from within our world of education.