Today, diabetes stopped me. It does that, which is why I am always somewhat confused at the toxic positivity of statements such as ‘diabetes doesn’t need to stop you’.

It stopped my plans for a walk with my kid because my blood glucose levels, for some reason, wouldn’t budge beyond 2.5mmol/l.

Ad then it stopped me joining a meeting on time because I accidentally ripped my pod off (door frames should come with a diabetes tech hazard warning) and the entry to my home office looked like a crime scene as blood gushed from my arm, all over the paintwork and down onto the floorboards.

That was just today. These may seem quite trivial, but they are just a couple of moments in time explaining how diabetes does indeed stop us in the moment, and in more significant ways. We can say that diabetes doesn’t stop us. And that may be the case. Until it does:

Until I am paralysed by fear of my kid having inherited the genes that have meant I have T1D.

Until I am overwhelmed by the fear of the unknown of what diabetes has in store for me tomorrow. Next month. Next year. Next decade.

Until I am being forced to spend time away from my workday to organise an appointment to have a form signed because my tech is being discontinued and some bureaucrat developed an implementation plan without considering the impact on people with diabetes.

Until I am told that I have developed some diabetes-related complication and I start catastrophising about how it will mean I’ll lose my independence.

Until I am feeling so burnt out by diabetes that I am unable to do the tasks I need to make diabetes just run, keep up with and fill insulin prescriptions, remember to order pump consumables and CGM supplies. (Oh, hey! Stripped Supply can help with this!)

Until we face stigma from random strangers in a café which may stop us doing the diabetes tasks that we need to do to simply stay alive.

Until a night of high glucose levels means I need a few hours of recovery, stopping me from carrying out the plans for the following day.

Until a bout of gastro leads to a bout of DKA and I find myself being forced to stop everything, and instead spend hours in A&E. (Or, if I’m lucky and have access to the VVED diabetes service, flaked out on the sofa managing at home.)

Suggesting that diabetes needn’t stop us ignores the systemic barriers that are a very real driver to diabetes stopping us. And campaigns rooted in toxic positivity do nothing to actually address those barriers.

Diabetes still means people are stopped from pursuing the career they have always wanted. And in some cases, it stops people from continuing the careers they have already built.

The considerable costs of diabetes – even in a country like Australia – stops people from doing a lot of the things they’d like to do. For some, the impact of diabetes on the family budget stops weekly food shops, other healthcare needs being met and household expenses being covered, and stops holidays from happening.

In some countries, where insulin is not easily available, or available at all, diabetes literally stops people from living. It’s pure privilege and a luck of being born in Australia that means this isn’t my reality.

Diabetes does stop us. And when we suggest that diabetes shouldn’t be a barrier and shouldn’t stop us, it erases the reality of day-to-day diabetes. And it can make us feel as though we are failing if we do need to stop and take time out.

Happy National Diabetes Week in Australia to all who celebrate. And for those of you who occasionally, or frequently find that diabetes does actually stop you sometimes, I see you.

More?

This article I wrote for diaTribe many years ago.