Being sick/disabled produces so much paperwork! The acronyms go on and on: DSA, PIP, ESA... How else am I meant to get enough money to live off? Filling out all these forms and attending all these appointments turns into a full-time job.
My latest form has been the PIP. PIP stands for Personal Independence Payment and has taken over the DLA (Disabled Living Allowance) in the government's attempt to save money. They have aimed to save this money by allegedly only giving money to those who really need it. But it depends on your definition of 'need'.
Unfortunately, the government's idea of 'need' is very literal, which may sound fine to you as 'why should we pay to help people do things that they want to do? There are things I want to do but can't.'
As someone with CFS/ME I cannot walk for more than 15 minutes a day, extremely slowly. And that is with my parents being my carers and doing most things for me while at home. No one wants to walk that slowly so I walk alone. I can't walk to the shops and back so I have to make do with what I can buy cheaply online and without being able to choose. I can't walk from and to a normal parking space when going out somewhere.
So yes, I can eat and wash myself, but I can't do most things that make life at all interesting. I become some invalid waiting for people to come visit me. And they don't. I'm 19, and it's hard enough having to forgo things that I should be doing and that I want to do as a 19-year-old without being told that I really can't do them ever because either a) I'm not really disabled enough or b) we don't have enough money.
I hate being told that I'm not sick enough for things. Am I in some inbetween bracket? I'm not actually, I have most of the same symptoms as diseases such as lupus and MS and yet I am treated with much less respect. It is literally all in a name.
And so how do you convey these everyday challenges into answering questions with 3 tick boxes labelled 'YES', 'NO' and the ever vague 'SOMETIMES'?