Responding

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!