Lived experience with diabetes stigma – Jane

Your assumptions may be completely incorrect

I kind of understand why people do stigmatise others (but not in a nasty way). I think it can just be a case of self-preservation. If you see or read about someone living with the same condition as you but they are dealing with the complications of that condition, I think it is quite natural to think ‘oh they must not have looked after themselves as well as I have’. This is just a way of reassuring yourself that it happens to ‘other people’ but won’t happen to you. I understand that. But please know that your assumptions may be completely incorrect.

I certainly know however, that the stigma, guilt and self-blame I put on myself is never-ending and completely debilitating. But I can’t say for sure whether the people around me (health professionals, colleagues, family and friends) look at me that way. I certainly imagine that they do but I am aware that this may just be me seeing stigma and pity where there is none.

Living with the emotional burden of diabetes complications is almost as tough as living with the actual physical outcomes. From the moment I was diagnosed with diabetes 40+ years ago, I was told that if I looked after myself, I would be okay. My take-out from that? I wasn’t okay, therefore it must be my fault. I must have done something wrong. Simple.

So for the past 25 years as my poker hand of diabetes-related complications has almost reached a full-house, I have assumed it is my fault and therefore I have to ‘suck it up’ and live with it. Don’t complain; I must have brought it on myself.

I see, feel and read the judgement everywhere. Sometimes I can deal with it and recognise that it is probably just me putting words and thoughts into other people’s minds but sometimes it can bring me completely undone. I can’t even articulate what stigma and blame – imagined or otherwise – do to your self-confidence.

Stigma can come from a lack of understanding. From a distance, diabetes can appear quite simple. You have diabetes, you take insulin, you watch what you eat, problem solved. Without the knowledge of how tough diabetes can be, it is an easy thing to think that complications are a result of not trying hard enough.

Diabetes Victoria works to support people to ‘live well’ with diabetes. I have not ‘lived well’ with diabetes. Diabetes has changed the life I wanted to l live. I love seeing so many people who have lived and are living wonderful lives with diabetes but it is a constant reminder of my ‘failings’ – my word, no-one else’s. I try hard not to be the ‘what if’ warning amongst the people I know with diabetes. Whether these people are blaming me silently, I’ll never know. And it doesn’t really matter I guess. I feel it, therefore it is.

We are all doing our best so try to be kind to people who may not seem to be doing it as well as you are. Take it from me, we are punishing ourselves enough without other people adding to it.

​​​​​If you are experiencing diabetes stigma, there are NDSS diabetes and emotional health factsheets, peer support groups and our advocacy team to help with social and emotional wellbeing, these are some of the handy resources available for looking after your emotional health...

You can read more about diabetes stigma on our campaign website, Think again. Let’s reduce diabetes stigma.