Lived experience with diabetes stigma – Simon

What diabetes stigma means to me

6 July 2021
By Simon, lives with type 2 diabetes

Nineteen years ago, a GP looked grimly at his heavily overweight, sweating, grumpy patient there to get a diagnosis for what was ailing him. “I think you might have type two diabetes,” he said. At least that is what I heard. Looking back, I think I just chose to hear ‘might’.

I doubt my GP (and yes, he is still my GP) actually said that. But nonetheless it was a less than certain conversation resulting in a referral to a diabetes nurse educator the following week for advice and confirmation. The nurse was of the ‘shock and awe’ brigade. Apparently, I was going to die, and pretty much straight away unless I followed her prescription to the letter. Loud threats of immediate hospitalisation (I drank two cans of coke on my walk to her clinic), amputations, blindness and heart failure was not really the best way to get me to listen.

Grumpiness turned into incandescence. But heck, I did storm out at least convinced that I was, as I described myself thereafter for a while, a type two diabetic. Calming down, I knew I wanted to take control of my narrative back from Nurse Troll. I was a career manager of not-for-profits. So, my first act was instinctual.

That very afternoon I joined Diabetes Victoria. But it takes time to take control and make yourself the responsible person, the manager of your own health, doesn’t it?

I remember at the end of that first year back in 2002 hiding my disease because folk tiresomely gathered to tell me I had brought it upon myself (an idea I was still grappling with) and whispering requests for the diabetic option at the many lunches my not-for-profit work seemed to entail.

I learned that many, many, of the people I ‘networked’ with in those days were living furtively with diabetes and its complications. Stigma had silenced them. I wanted to live happily and healthily, though - so I needed to find another way to live with diabetes.

I read. I actively searched for studies and trials to participate in at universities, hospitals, health centres and Diabetes Victoria. There are so many good people out there who are on our side and looking to find ways make our lives better (and longer). This helped restore confidence and gave me a capacity to start to acknowledge and talk about living with diabetes. I also gained knowledge, tools and skills needed to self-manage.

I am fortunate. I am still far from being the ‘better me’ I’d like to be. But at least I have the confidence and capacity to keep working at it. Our community needs to keep fighting to ensure that everyone living with diabetes has access to the opportunities I have been able to grasp and benefit from. Anyways, enough of that. I am off to buy a potato cake and dim sim for lunch.

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.