Sometimes being chronically ill you often have a burden fit and healthy people don't. Some of these are unnecessary burdens placed on individuals by a bureaucracy that puts itself before it's community.
I recently have had to face this for the umpteenth time. You're constantly having to prove your chronic lifelong ailment is still with you. The whole nature of a chronic illness is it has to be managed because it can't be cured. It may not kill you like a terminal illness will but it still makes life harder.
Thing is these bureaucrats are constantly asking for proof when after jumping through all the hoops they finally accept it, they start asking to prove your capacity to participate in the community, then it starts all over again. It's a full time job being sick to satisfy the burden these unreasonable policies placed on the sick.
There is a well known essay that talks about living with a chronic illness. The concept is each day you only get so many spoons (energy) and everything you do uses up that limited number of spoons. This is very much true, while not every day is a bad one, not everyone is a good one either. Thing is when you have a good day and have plenty of spoons you want to use them being you, having a life so you can get through the bad days.
However, everyday it becomes harder and harder for the chronically ill person to have a life because more and more of their spoons are increasingly being stolen by bureaucratic red tape. You get frustrated with the poor people trying to implement these insane policies. It's not their fault but your frustration is already high because unlike them, this isn't some black and white box ticking exercise, for you this is your life.
There is an increasingly greater number of unfortunate people in between you and decision makers who due to this bubble are making decisions based on incomplete information often wilfully so. Language makes a big difference in setting the narrative. This is demonstrated in Covid-19 pandemic death reporting which suggests underlying conditions are a prominent factor.
The reality is more and more in the community are living with chronic illnesses. Using it as an excuse to mitigate responsibility for different things has created this unnecessary administrative nightmare faced by people with serious chronic illnesses. This is the consequences of not thinking things through, an unfair burden placed on the most vulnerable in our community to make those in decision making roles feel better about the choices they make. This shouldn't be an additional burden we have to carry.
Give us our lives back!