Yes, we know that diabetes is a so-called invisible condition. I’ve written about it a lot both here (and here, and here, and here) and other places as well. And I’ve also grappled with how I feel when I realise that my carefully and deliberately shrouded condition actually becomes visible without me knowing it.

Our diabetes does not wear a cast or make us immediately look different in any way. We are not identified as someone with diabetes until we tell someone that is the case. Even when diabetes is impacting on us in the moment physically – for example if we are actively dealing with a low or a high – and there are around others, most people would not automatically think ‘diabetes’.

As a condition that can be hidden, diabetes is referred to as invisible. But lately, I’m not sure how comfortable I am with this idea, because I think it is a little murky when thinking about just whothe condition is invisible (or visible) to.

So I decided to ask a few people what they thought: people I know well, family members, work colleagues, friends and acquaintances. Just about everyone I spoke to said that they thought diabetes was invisible. They said that rarely would they think diabetes when around me, unless we were specifically talking about it, or they noticed me ‘doing diabetes’. Someone I asked actually said ‘Oh, I forgot you have diabetes,’ which I guess points to just how invisible some people see (or rather don’t see) my diabetes.

The only people who said they didn’t think diabetes was invisible were friends with diabetes. ‘How could I think that?’ someone said. ‘No one living with diabetes thinks it’s invisible. It’s always in our face.’

That’s exactly how I feel. When we say diabetes is invisible, what we are saying is that it is invisible to others. The invisibility cloak only applies to people looking at us, not those of us whose diabetes is under that cloak. For us, it reminds blindingly visible and present. It’s the devices on our bodies (even if we hide them under our clothes); it’s the scars from puncture wounds; it’s the always-present glucose meter; it’s the blood stains from pricking our fingers or removed CGM sensors or pump lines; it’s the glucose strips that get into every crevice of our homes, our cars, our pockets, our bags, or workplaces; it’s the alerts and alarms that sound from our phones and devices; it’s the pop up reminders of medical appointments or to fill repeat prescriptions or pick up NDSS supplies. And they’re just the things we can see and hear, not taking into consideration the constant presence of diabetes in our minds, our hearts, our souls…our very being.

To a degree, we can control just how visible we want diabetes to be to others. Personally, I like that I can chop and change how noticeable the physical signs of my diabetes are. Today, I am walking around in a tank dress and the Dexcom on my arm is obvious for all to see. But throw a denim jacket over it and it disappears, sending my diabetes incognito.

For some people, making diabetes invisible is important. Others like it to be front and centre. There are myriad reasons for making decisions around this, and those decisions and choices will be different for everyone.

I do wonder how much of that decision is made exclusively by the person living with diabetes, and how often we change the level of visibility based on what we believe others may expect. Are we wearing our diabetes loudly because we feel we have to or because we feel we should? I know I have been the loud, out there advocate because I’ve felt I should be.

Or is there something about the shame and stigma of diabetes that makes people want to hide it away? Or are we trying to minimise the visual, or audible signs of diabetes to protect others? Or to stop others from feeling burdened, bored or worried about our diabetes? I also know I do that a lot.

But try as we might, for those of us living with diabetes, we cannot conceal it from ourselves. It lives with us, in us, around us. And it is always visible.