On Saturday, we hosted our latest Type 1 in the City event which covered one of the almost-taboo topics of diabetes – complications. As a diabetes organisation, we seem to at times be scared of speaking about this issue and when we do it’s in hushed tones. Despite being one of the most requested topics on our event feedback forms, we’re reluctant to put it on our ever-growing calendar of events.

As a person living with diabetes, I don’t like talking complications.  In a stupidly superstitious way, I feel that if I do I’ll make them come true. (Yep – me and logic. Best friends!) But after 15 years of living with diabetes, I am, for the first time, having to face complications head on. The cataracts that have been threatening to cause vision problems are now at the point where I can no longer ignore them. At my six-monthly ophthalmologist check-up last week, I decided it was time to bite the bullet and schedule the surgery to have them removed.

I’m not okay with this and it’s more than just being a complete and utter wuss when it comes to eye things. Although it’s likely that I was going to develop cataracts, my diabetes is probably the reason why they first appeared when I was 28 year old and that I will be having surgery for them at 40.

I believe that at Diabetes Australia – Vic (where I manage Community Programs) we have a responsibility to put discussions about diabetes-related complications on the table. We should be talking about them. As soon as a topic becomes taboo, there is shame and stigma associated with it. And that shouldn’t be the case. For many living with diabetes, complications are a reality. We should be providing not only information about how to reduce the risk of developing complications, but also information about continuing to live well if complications do eventuate. And we should be doing this in a safe way that doesn’t cause shame or feelings of failure.

Maybe we need to start to rethink the way we speak about complications. Time and time again we hear that if we ‘take care of ourselves’ we won’t get complications. But we know that is not the case. It suggests failure on our part if we do get complications. Sometimes people do their very best with what they have access to, and complications still happen. If we reframe the discussion and make sure we consider the role luck or genetics may play, will that mean that people are less inclined to ‘do the right things’ because they think the result is pre-determined? Or will people actually feel better knowing that, if they do develop complications, they feel confident they’ve done the best they can with the tools available to them and the capacity they have.

My dear friend who does live with some diabetes complications is my go-to person when I want to ask questions about living with such challenges. She has some really strong and valid views about how we should be discussing diabetes complications. She says, ‘Discussions about complications shouldn’t be used as a threat. We don’t need to be showing the horror stories, but we do need to have available real, factual information about complications for those who would like to find it.

‘Also we need to make people aware that complications are not the end of the world. There are lots of people walking around with complications, living their lives. I work with others with diabetes and I don’t want to be the constant, visual reminder of what ‘can happen’. But I hope that they see that even with complications life can go on.’

One of the things that my friend mentions is that at times she doesn’t feel connected to the diabetes blogs she reads.

‘Sometimes when I read blogs like yours I think that you are doing it easy. It seems like you are doing really well with it.  I don’t mean that with any disrespect, but my experiences are really different to yours. I’ve never read any blogs about people with diabetes who have had the same experiences as me.’

So what do we need when we are talking to people who have complications?

‘We need peer support – whether in a group situation or one on one or on the phone or online. While having treatment for complications, I was not given any offer of support like this and I think perhaps it would have been good for me.’

I feel incredibly lucky to have this particular friend in my life. I know that she worries that hearing about her diabetes life may scare me, it does the exact opposite. I know diabetes complications may occur – they were shown to me in all their gory detail the very day I was told I had type 1 diabetes and I was terrified. But speaking to her, watching her live a rich, full life (despite being a Collingwood supporter) doesn’t terrify me. It reassures me. It helps me understand that if complications are part of my diabetes future, they don’t signal the end. And that has given me hope. She’s pretty damn amazing!

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