If I’m asked about the burden of diabetes stigma, a complex tree diagram starts to form in my head. There are branches sticking out at weird angles with arrows and overlapping segments and odd clusters…and I suddenly become burdened just thinking about diabetes burden!

I’ve written before many times about just how heavy diabetes can be – a dense weight that comes from the never-ending need to ‘do diabetes’ and the never-ending attempts to make sense of it all. And I’ve commented on the emotional weight that we feel when diabetes becomes overwhelming and distressing, and the burden of burnout. And I’ve also written a lot about the relentless stream of diabetes admin – and why having a personal assistant to manage my diabetes would be just so damn useful to alleviate the burden of appointment making, prescription filling, consumables stocktaking and complications screening

Burden takes on many forms. And it means different things to different people. If there is a burden spectrum, we would see people plotted all along the line. And we would move around as well. I know that there have been times I’ve feel far more burdened by diabetes, and I know that I feel so much less burdened since I’ve been using Loop because the tasks that added to that daily burden have diminished considerably. Diabetes makes a lot more sense a lot more of the time without me needing to work it out. Of course, the weight is less. 

But on top of the daily tasks and the feelings of being overwhelmed, there is still more that can contribute to burden. One of those things is stigma – the way others make us feel about diabetes – about our diabetes – can add significant burden. 

Yesterday, I tweeted this:

If you want to see an incredibly diverse and interesting discussion about how stigma has impacted people with diabetes, and parents of kids with diabetes, click on the tweet above and read the replies.  I asked the same question on my Facebook page and the stories there were equally harrowing. People’s experiences are heartbreaking. It becomes clear why people drop out of healthcare, are terrified to see HCPs, or try to hide their diabetes from others when you understand how they have been treated. 

The weight of that burden is heavy. The judgement and blame and shame can weigh us down. The emotional weight of stigma can be paralysing. 

One of the themes that is recurring when it comes to stigma discussions is the idea that we are not doing enough to look after ourselves. That could be in reference to developing long-term complications, or it could be an in-the-moment situation that someone thinks we should be better prepared for. I remember someone once criticising me for not having any jellybeans on me when I was having a hypo. I’d had three hypos already that day, and had worked through my stash. I wasn’t wilfully neglecting my diabetes by being caught short. But that was the assumption. 

Another theme is that diabetes is a character or personality flaw, brought on by not caring enough about out health. How tiring it is to have that being said when we are also trying to simply manage to live with diabetes. Weight stigma and diabetes stigma go hand in hand for many, with assumptions made left, right and centre. 

Being diagnosed with diabetes creates burden. Living with diabetes brings daily burden. Worrying about how diabetes might impact our futures crafts more burden. And stigma adds even more. It’s exhausting, hurtful and just downright unnecessary. 

More musings about diabetes and stigma

Stigma & diabetes-related complications. 

Owning my own contributions to diabetes-related stigma in people with type 2 diabetes. 

Where does stigma start? 

How insisting on defining diabetes when it doesn’t matter adds to stigma.