I have been fairly quiet on Twitter lately. My blog has been dormant, and I’ve really only been using social media to connect with family and friends. Oh, and sharing recent baking efforts – as evidenced by this Twitter thread last night.

But that doesn’t mean that I have stopped following what is going on. Plus, it’s difficult to ignore stuff when many people start sending DMs wanting to know why I have been silent on an issue about which I am known to be very vocal.

I’m talking about last week’s webinar hosted by Diabetes Victoria, presented by Dr James Muecke.

Firstly – some disclaimers and disclosures. I worked for state-based Diabetes Victoria from 2001 to January 2016. Since then I have been working for Diabetes Australia, which is a national organisation.

James Muecke is the 2020 Australian of the Year. I wrote a little about him in this post which caused a shit storm of its own when a UK HCP tone policed me my writing and said that I was doing a disservice to people with diabetes by writing in the post that there is no need for people to know what type of diabetes they live with. Yeah – I didn’t say that, but anyway…

But the issue was not Muecke’s presentation; it was the title of his presentation: Blinded by Sugar.

My reaction when I first saw the promotional flyer was horror. And then shock. And then surprise. I was honestly stunned.

And then, once the surprise and confusion subsided, I felt distress. That feeling of dread, and sadness, and anxiety that settles itself in the pit of my stomach. And doesn’t move.

When I talk about language, its power and how it is personal, this is what I mean. Because to me, it’s not just a couple of words in a clumsy, ill-conceived title. Suddenly, it is every single time I sit in the waiting room of my ophthalmologist’s waiting to hear if diabetes has started to affect my vision; it is the flooding back of words from my first endo appointment, where I was told that if I dared let my glucose levels get above 8mmol/l, it would be my fault if I became blind; it is the blame and shame and stigma and finger pointing that we see and hear every time we are told to ‘look after ourselves’ as if we are wilfully ignoring our health and not caring about our wellbeing; it is the guilt that I feel when I eat some cake or a biscuit and the times people have asked ‘should you be eating that?’; it is the feeling of frustration and unfairness of when I can’t work out how my glucose levels could possibly be high after I’ve done everything ‘right’, and the fear of what damage is happening to me at that moment; it is the burnout, the anxiety the days of feeling so overwhelmed because I just.can’t.do.this.anymore, but I have no choice’.

THAT is how I feel when I see words like those in the title of that webinar presentation.

It’s no surprise that this was picked up by some people in the DOC. There are people in the community who are highly attuned to language and diabetes and will call out any example that is doing a disservice to people with diabetes. I am usually one of those people. I’m not proud that I didn’t say anything publicly when this was unfolding over the weekend.

So, what has happened since then, after some of the DOC shared their feedback?

Diabetes Vic CEO, Craig Bennet issued an apology and should be commended on how swiftly he did that. Owning the error and promising to do better is always appreciated.

Today, it seems that the LCHF bullies have now jumped on board, supporting the messaging in the original promotional flyer.

I will say this strongly and without reservation or apology. When you find that you are satisfying this group, you are not helping PWD. It is a person from this group that tweeted this about a group of dietitians. It is this group that fat shamed me after I gave a television interview last year. It is this group that has stigmatised people living with diabetes, claiming they have brought on diabetes-related complications for daring to eat a scoop of ice-cream.

I couldn’t care less about how anyone chooses to eat. I do care a lot when it comes to how certain groups in the community contribute to the already overwhelming stigma faced by people with diabetes.

And finally, everyone makes mistakes. In the last few months, we’ve seen some pretty miserable efforts by diabetes organisations around the world. But the thing that has stuck with me through each of these is how easily they could have been avoided. We do need more engagement with people with diabetes – especially those who can help shape effective communication and messaging.