Diabetogenic

I’m almost ready to take a deep sigh of relief, because National Diabetes Week is almost over. It’s been a busy week – it always is. I’ve been working for diabetes organisations for a very long time, and have seen quite a few national campaigns, including some of which I was very, very critical. (Just ask the Comms Manager I worked with for over 10 years who had to deal with me complaining a lot!)

But today, I am writing only of this year’s campaign, which has highlighted the need for a National Diabetes Amputation Prevention Strategy. The campaign has not pissed me off which is a pleasant surprise for everyone who has to work with me. I don’t think it is a scare campaign. I don’t think it is graphic and gory. And I don’t think it is laying the blame for developing diabetes-related complications on people with diabetes.

On Sunday, within hours of the launch, the criticism started. I posted this on my FB page, and my frustration is pretty apparent.

Throughout the week, in between doing interviews trying to raise awareness of diabetes and why it is really crap that each year 3,740 have diabetes-related amputations that could have been prevented, I have read many comments about the campaign. A lot of them – in fact the vast majority – are really positive. Many people understand the complexity of communicating a really difficult message to a very diverse audience. But not all of them.

I have never subscribed to the idea that everyone needs to have the same opinion. And I have never ever shied away from people criticising me or the work I do. I like robust discussions, especially if they are respectful and that everyone is open to considering – not necessarily agree though – with all sides to the debate. (Unless we’re talking vaccination. Then there is only one side.)

But I what I absolutely despise is that any time diabetes is in the media and someone doesn’t like the angle, because what is being discussed is not relevant to them, or they don’t like the message, they respond with immediate outrage and negativity and refuse to consider other positions. This is not just a diabetes thing – social media outrage is the default position for many – hell, I’m guilty of it too. But often with the outrage comes assumptions and the perpetuation of misconceptions about diabetes.

In my capacity as an employee of a diabetes organisation, I have read the comments and not replied. That includes to the direct messages I have received on Twitter and Facebook and email that have been personally attacking and have called me some pretty choice names. (There is no denying the power of deleting and blocking!)

But today, I thought that here, I would put down my responses to some of the comments I’ve seen online. (Please remember that this is my blog and all opinions are mine. Nothing I have written here necessarily reflects the thoughts of the organisation I work for.)

1. The campaign is not relevant to people with type 1 diabetes.

Of course it is! You have diabetes – any type – and you are at risk of complications. That’s the reality. It’s unpleasant; I hate thinking about it; it terrifies me.

Here is what denying this reality does: it adds shame and stigma to those who do live with complications. Had a limb amputated? Well, obviously it’s because you didn’t look after yourself and are not a diabetes superhero like me.

2. Type 1 and type 2 diabetes are not the same thing.

Yeah, I know. I get it – they are two different conditions. Sometimes though it’s not relevant to differentiate. 4,400 people have diabetes-related amputations each year. Some are type 1 and some are type 2; some are men and some are women; some are older and some are younger. They are all people and they all have diabetes.

3. People already diagnosed with diabetes know what happens if their condition is not well managed.

Absolutely not true and a dangerous idea to perpetuate. And this sort of comment is a brilliant example of not being able to look outside your privilege bubble.

If you are in a position to know a lot about your health condition, have access to specialist care, have wonderful support around you, (or know where and how to access support), can afford the latest treatment and technology and are managing really well – that is fantastic. I am one of those people and I know how lucky I am. But many people do not. If you are sitting on the end of a computer, complaining on Facebook and/or blogging about your experiences, you are privileged.

If you are one of those people and think everyone else is just like you, you are wrong and I would really urge you to maybe look beyond the Facebook page where you do your bitching and moaning.

Also – what is it saying to the people who have done everything ‘right’ and still have developed complications?

4. People with type 1 are well aware – it’s people with type 2 that have no idea what they are for if they keep mismanaging their health.

Really? Just wow! Let’s break this into two sections:

• It’s a mighty big assumption to make that all people with type 1 are aware, capable and well-informed of their condition. It’s also incorrect. And it says that we don’t need to be focusing on people with type 1 because we are all clever clogs and know everything!
• The idea that it is only people with type 2 diabetes who have no idea is wrong and also really stigmatising. And it shows a complete and utter lack of understanding about type 2 diabetes and those living with it. Maybe that campaign about the different sorts of diabetes needs to start from within the diabetes community first. How can we expect people completely unaffected by diabetes to know the facts of those of us in it are so ill-informed at times?

5. What would you know? You don’t live with diabetes.

Hi. I’m Renza (or Brenda, Peta, Wenzer). Here is my blog about living with diabetes.

One of the things I have come to learn is that there is no way that a single diabetes campaign will appeal to everyone or be relevant to everyone living with the condition. And that there is no making all people happy all of the time. In the spirit of this piece of advice, I am calling the week over and putting it in the vault. Have a great weekend everyone!

The new Prime Minister of Britain has type 1 diabetes. I am sure that you have heard this about her, possibly mixed up in the commentary about her hair and shoes. (Which is, of course, THE most important thing about a woman who has become one of the most powerful leaders in the world and absolutely what we should all be talking about. Ugh!)

Pretty much everyone I have ever met has informed me that the new PM has type 1 diabetes. I have had calls, emails, Facebook posts and texts from people excitedly telling me that Theresa May is just as pancreatically-challenged as me! Many have asked if I am excited that we have a new pin-up gal for ‘our cause’.

I’m not commenting on May’s politics – that is actually totally irrelevant to how I feel about having a world leader with type 1 diabetes.

Here is what I would love to see about Theresa May’s own diabetes. Very little. Because I don’t want her type 1 diabetes to become a focus. I don’t want type 1 diabetes to be ‘blamed’ for questionable decisions, political gaffs, or the fact that she fell asleep in parliament last week.

Because people without type 1 diabetes make bad decisions all the time. And people without type 1 diabetes make political gaffs. (Barnaby? David? I’m looking at you two…) And people without type 1 diabetes fall asleep in parliament because often there is a man in a suit speaking in a monotone about something possibly rather uninspiring. For a very, very, very long time.

In the same way that every move AFL player Paddy McCartin makes is scrutinised from the position of his defective beta cells, I fear that may be the case for Theresa May.

A world leader with type 1 diabetes is brilliant because it can show people that diabetes need not be a barrier to being at the top of your game. We all love a story like that!

But being the excuse for any negativity – or becoming the focus of her time as PM? That can do ‘our cause’ more harm than good.

Related – but not really

Discussions about Theresa May have included me saying: ‘Well if Jed Bartlet can be President of the United States of America with MS, Theresa May can be PM with type 1.’ I had to be reminded that Jed Bartlet is not real – and no matter how hard I hope and wish for it to be true, it never will be. Damn. 

Today I attended the Victorian Kellion Victory Medal Award Ceremony. There before me, sixty-six people were awarded medals for having lived with diabetes for 50, 60, 70 and 75 years.

I write about this event every year, and each year, I write about how much hope and inspiration I feel while sitting in the room.

Because it’s true. I walk away from the Kellion awards full to the brim and amazed at what these people have achieved. I’m never sure if it is despite or because of their lives with diabetes that I feel this way. But, undeniably, it is a special day.

Frequently the stories are the same – a shock diagnosis, sometimes a misdiagnosis. Many are unable to pursue their chosen career, especially in days where teaching or nursing were not possible vocations for people with type 1 diabetes. Many spent a lot of time in hospital as they adapted to their post-diabetes-diagnosis life. And many reminisce about injecting into an orange, which apparently was the done thing for a newly diagnosed person 75 years just as it was 18 years ago when I was diagnosed – and still today!

And they share tales of brutal management instruments and tools that in equal measure terrify me and make me glad of the time I was diagnosed.

The hope exists for me because when I look around the room, and I listen to the stories and I speak directly to the recipients and their families as they proudly hold on to their well- earned medals I don’t see diabetes. I see people.

They don’t all claim that diabetes has been fun or that it has been a breeze. In fact, some of them are really open about just how tough it has made their life. But even those who say they have really struggled, still do not believe diabetes has been the single most defining aspect of their life.

I’ve always said that I wish all newly diagnosed people could meet a Kellion medal so they can see that everything will be okay. But I think that was a little naïve of me and actually undermines just what it has taken for these people to be standing there in front of us, accepting their medal. And it also suggests that diabetes hasn’t actually had some sort of impact on their lives.

These are ordinary lives made extraordinary by diabetes. And while their achievements are not there for my benefit, I am so glad that I get to hear their stories.

Source – @DiabetesVic