Tuesday, 30 June 2015

A little information can be a dangerous thing

Yesterday CrossFit caused what modern media would call a "Twitter storm".  Other people would call it a disagreement, a difference of opinion or simply a mistake.  Modern media loves hyperbole - me, not so much.

It started with this:

It's reasonable to say that this was certainly offensive to many people.  It's equally fair to say that what it's insinuating (Coca Cola causes diabetes) is also untrue.

I saw this shared a few times on Twitter and did so myself, highlighting to friends how inappropriate it was.  All the responses to that tweet were pointing out why the message was wrong, how insulting it could be and how people personally affected by diabetes had taken offence.

You'd expect CrossFit to realise the error of their ways, apologise and everyone could move on.  What they did instead was post a link to an article about how sugar was linked to diabetes.

At this stage it's worth pointing out a few facts, specifically that there are two types of diabetes.  Type 1 diabetes is an auto-immune condition and the cause isn't clearly known.  It typically presents in younger people but can do so in adults.  Type 2 diabetes is generally (but not always) brought on by being overweight and partaking in limited physical activity.  Gender, age, ethnicity and genetics also play a big part in determining if someone is more likely to get Type 2 diabetes.  

As you'd expect, a few people challenged Cross Fit about their link and as you can probably guess, CrossFit didn't really stop to think about what they were saying or how it was perceived.  Their next tweet said:

That's not true.  You can only have Type 1 diabetes or Type 2 diabetes.  You can't have both.  You can become more resistant to insulin over time if you have Type 1, but that doesn't mean you have Type 2 diabetes.

As you can imagine by now, this cycle of posting inaccurate information, only for it to be challenged by the knowledgeable diabetes online community continued.  One such tweet (since deleted by the CrossFit team) said this:

"and yet our point that diabetics shouldn't be drinking liquid sugar remains perfectly valid"

That's an incredibly dangerous and inaccurate thing to say.  It's also fairly irresponsible when you consider that over 293,000 people follow the CrossFit account (and some who aren't as well informed about diabetes are likely to believe it to be true).

For someone like me who has Type 1 diabetes, actually following that "advice" is potentially life threatening.  If I was having an episode of low blood sugar (hypoglycemia), something like Coca Cola would be absolutely necessary to stop me losing consciousness (and possibly my life).

It's easy to jump on the back of CrossFit (or at least whoever was in charge of their Twitter account yesterday) but I think the problem is more wide ranging than one errant social media account.  

The wider media perception of diabetes is that it's not necessarily all that serious, that everyone who has it does so through their own fault, and that by eating less sugar it's all entirely preventable.  For people living with the condition, it's both insulting and intimidating.  Attaching that level of stigma to a chronic illness is very irresponsible and can lead to people withdrawing, being scared to talk about their condition and not managing it correctly.

There's also some sort of implication that diabetes is fair game for jokes.  You don't see the same sort of things for other conditions like cancer (and rightly so I should add) because it's incredibly serious, life threatening and no-one's fault that they have it.  What people don't realise about diabetes is that all these things can apply equally.

At the start of 2015, Jamie Oliver apologised when being pictured next to a giant coke can with "Diabetes" written on the side in the Coca Cola font, stating that he was actually trying to highlight the lack of water in some American schools, where children were picking up sugar laden soft drinks  as there was no other choice.

As someone with diabetes, I don't expect everyone to know as much about it as I do or to understand how difficult it can be to live with.  Before I got diagnosed, I barely knew anything about it, but equally I didn't claim to know anything about it either.

As a person (diabetes or otherwise), I do expect those in a position to influence others (be it newspapers like the Daily Mail, or CrossFit twitter accounts) to report or comment on something serious after they've properly researched the full facts.  Passing off ill-informed opinions can have serious implications for millions of people and ultimately it's irresponsible to do anything other than be crystal clear with the truth.

The irony is that an active lifestyle is one of the best things you can do to help manage diabetes of either kind, and to help prevent Type 2 diabetes.  CrossFit seemed to be in the perfect position to use the facts to highlight how what they offer can benefit a lot of people.  Instead they chose to try and pull off something smug and fortunately it seemed to backfire.

Overnight (in the UK, during the day across the pond), it continued to rumble on.  There's something quite unsettling about watching an organisation who are clearly in the wrong continue to try and justify and defend their behaviour:

Firstly, as you can see above, "offending the sensitive" is apparently a small price to pay to ill-inform people.  For the record, I personally don't believe drinking excess amounts of anything is particularly good for you, not least Coca Cola.  But I also know that obesity is the link to Type 2 diabetes.  Excessive sugar consumption will most likely lead to obesity, in the same way that excessive consumption of anything calorific will do.  Eating sugar does not directly cause diabetes of any type.   Eating (or drinking) 'treat' foods (those higher in fat and sugar) should be done so in moderation.  Eating fresh fruit, vegetables, lean meat and some carbs is a balanced healthy diet.  But I say again, you can't get diabetes from eating sugar.

Next up, (just cut off at the top - sorry) is a triple whammy.  Firstly stating that any apology would be insincere, followed by a confirmation that making jokes about chronic illness is OK, and finished off, perhaps most staggeringly of all, by a tweet expressing disappointment about the "misinformation about diabetes and the role sugar plays in causing it".

If you've made it this far, the irony that CrossFit are the ones presenting misinformation is probably not lost on you.  Also EATING SUGAR DOESN'T GIVE YOU DIABETES.

CrossFit kept on pulling the trigger stating that if they have to insult "the sensitive" they will.  Well they don't have to insult anyone, 'sensitive' or otherwise.  They could just listen, understand and be more accurate in what they say.  Finally, they return to the scene of an earlier crime, stating that people with Type 1 diabetes can develop Type 2 diabetes.  No they can't.  Type 2 diabetes (as discussed way back at the beginning) essentially means your pancreas produces some insulin, even the tiniest amount.  Type 1 diabetes means your pancreas has no functioning beta cells (that produce insulin).  These two conditions are at odds - you can have one or the other, but not both.

At the time of writing this, I've not seen an actual apology from CrossFit for the way they misrepresented the facts.  They did post a few (subsequently deleted) tweets saying it should have been clear  they were only talking about Type 2 diabetes.  It wasn't clear, and it certainly wouldn't really have been any more accurate anyway.

They also posted this on Facebook:

When they say "the link between sugar and Type 2 diabetes is undeniable", they really should be talking about the link between obesity and Type 2 diabetes.

The also posted this on Twitter (highlighting that they absolutely haven't apologised):

I don't need an apology to make me feel better.  I know enough about diabetes to not need their validation or permission to do what I want.  I do want them to apologise for being lazy and irresponsible with their language that perpetuates the stigma of diabetes.

There's a reasonable chance you're reading this because you know me in some way, so you've probably read a lot of the science that distinguishes between Type 1 and Type 2 and nodded along.  Other people with a lot less experience of diabetes (like me 15 years ago!) simply do not know (and we shouldn't necessarily expect them to know) the difference, and are likely to be guided by the 'facts' that companies like CrossFit have misrepresented over the last 24 hours or so.

If you want facts about diabetes in this country, visit the Diabetes UK "Guide to Diabetes" page where you'll get accurate information.  Don't rely on companies with gimmicks to tell you the truth about something complicated.

There's a daily struggle to change that stigma that many people are subjected to that says having diabetes is your fault and you're to blame.  Some diabetes is preventable, but a lot of it (including all Type 1 diabetes) simply is not.  CrossFit haven't helped do anything to change that stigma and stereotyping and I think that's a real shame.

Apologies this has been long winded, but highlighting and disproving 'claims' like the ones CrossFit made today is really the only way that the perception will gradually begin to change and people with diabetes will stop being bullied, stigmatised, stereotyped and blamed about their condition.  We wouldn't put up with it for other long term illnesses, why should we stand by and accept it for diabetes?

CrossFit - #ImNotYourHomie

Monday, 15 June 2015

Diabetes And Me

A blog on here is sadly a rare thing these days.  It’s not that there’s nothing to say, it’s that there’s less and less time available to write any of it down (though I still have my regular post over on the Diabetes UK Blog site)!  That said, I felt inspired to pen something, however brief for Diabetes Week.

This year’s theme is “Diabetes & Me” and having already read so many wonderful posts I thought I’d throw my own opinion into the mix.

Put simply, I truly believe that since the start of 2013 I’ve been able to control and understand my (type 1) diabetes more successfully than I had in the previous 10 or 11 years and that the reason for that is threefold:

1.       Finally running out of excuses and actually attending a DAFNE course – a complete step change for the better
2.       Having regular opportunities to speak to people with diabetes face-to-face at local group meetings and other events
3.       Being involved in part of the wider diabetes online community through Twitter in particular

I’m sure I’m banging the same drum as many other people, certainly with respect to that last point, but the effect that talking about your own experiences of diabetes with others who completely understand everything you’re saying is unquantifiable.  We’re all members of a club we wouldn’t have joined by choice, but those things that unite us are the same things that we can use to support each other when things aren’t going to plan.

At the end of the day, those ‘every day’ experiences like hypos, carb counting, finger prick tests, hypers, tiredness like no other – they’re all things that people who aren’t in the club can’t understand in the way we do.

I recently spoke at an event in Sheffield where GPs had come to learn more about diabetes and I made the point that over 99.9% of the time someone has diabetes, they’re managing it all by themselves.  It’s down to us to become experts in our own right and education and peer support are the foundations that we build on.

I went over 10 years without speaking to another person who was the same as me.  Ten years of never speaking to another person who knew how sickening it can be to have a hypo.  Ten years of not really understanding how fattier food can affect my BG levels.  Ten years without feeling like anyone else understood what I was going through.

It’s incredible to look back on that today and feel so much more secure in how to deal with whatever diabetes throws at me.  It can be incredibly nerve wracking to open up to people about your diabetes, but I can promise you the benefits you’ll get will be incredible.

If you’re on Twitter, you can look me up @BroomOwl and if you’re in the Sheffield area, I chair the Sheffield Group of Diabetes UK who meet monthly.  More details about what we do and how we can support you are on our website

Happy Diabetes Week