It’s so distressing when you have a team whose job is meant to be helping you.
The people whose role is to coordinate your care. To advocate for you. To help you access the supports you need. To make living with complex disabilities and chronic illness just a little bit easier.
Instead…
Emails go unanswered for six weeks or more.
Five out of six appointments with the same doctor are cancelled.
Phone calls aren’t returned.
Things you were promised quietly disappear into the void.
Yet somehow the invoices keep arriving.
Charged for services rendered.
What services?
I already spend so much of my limited energy fighting my own body every single day. I shouldn’t have to spend the rest of it fighting the very systems and professionals that are supposed to have my back.
People talk about how exhausting chronic illness is.
What they don’t talk about enough is how exhausting fragmented care is.
The endless chasing.
The constant explaining.
The paperwork.
The waiting.
The feeling that unless you do everyone else’s job for them, nothing happens.
I’m tired.
Not just physically.
I’m tired of having to beg for the care I’m already supposed to be receiving.
No one with a complex disability should have to become their own case manager just to access healthcare. But that’s exactly what so many of us are forced to do.
I don’t want special treatment. I just want the support I’m already supposed to have.