My Time in Rage over the past few days has been high; very high. That’s not a typo, I mean Rage (with a capital R). Since I published a post about airport security screening, a dozen people have messaged me with their tales of systemic failures that have left them feeling pretty damn overwhelmed. This is in addition to the myriad conversations I’ve had over the last twelve months. The situations may differ, but the underlying theme is consistent – this is a system that is not working, and people with diabetes are left exposed.
As systems break down, PWD are forced to deal with confusion, uncertainty, and a glaring lack of support. This is not confined to one specific area. I may have written about airports on Friday, but it spans across various aspects of our diabetes lives. The consequence is PWD in the firing line.
I’m forever thinking about the labour borne by people living with diabetes and how systems increasingly shift care responsibilities. Not only are we burdened with intricate care coordination and management, but also, we’re left exposed when navigating through systemic failures. Diabetes necessitates that those of us who live with the condition shoulder most of the care, but that burden shouldn’t then be compounded by systems that fail us – whether it be airport security checkpoints, or in healthcare settings.
Even worse, we know decisions are made around us, or without our direct input and when we highlight how things are not working, we are met with defensiveness and excuses. Inconsistencies, confusion, and a lack of clear communication may all be the reasons that things don’t work, but they are problems that are not ours to solve. It is not our role to make sense of chaotic labyrinths. We should not be expected to decipher the complexities behind systemic failures. Our focus should be on managing our diabetes, living our lives, and not on mitigating the fallout from systems that are supposed to support us.
I know that it can be argued that there are better ways to deal with matters than getting all rage-y. I agree with that; it’s counterproductive and draining. High Time in Range is often accompanied by distress, and hampered efforts to do diabetes well. It’s counterproductive and it’s draining. But sometimes, it really is difficult to keep that rage in check, especially when I believe that people with diabetes are getting a rough deal.