I’ve written this page to give a tiny snap shot into my disabled life, and like everything else it’s one part of my life, and this is it expressed on one day. Everyday is different, and once you’ve read it and highly suggest you google the spoon theory – I’ve found that a great help.
I’m not new to this world of ‘disability’. The hospital appointments, the prescriptions, the tests, the scans, the therapies. Truth is, it’s more than half my life now and barring some miracles or great advances in science, this isn’t going to change. We’ve come a long way as a society, but still people hear disabled and jump to conclusions. I remember being 13 or so in town using an electric wheelchair when a cashier refused to serve me, she couldn’t see that I had a physical disability, or rather what we were still calling at that time a ‘sports injury’ but instead I must be mentally handicapped and thus she either would not or could not communicate with me. I still wonder to this day about people like her, is it ignorance, fear? Either way I like to think the world isn’t full of mean people just being mean for the sake of it.
From that to more recent times, I can almost guarantee that if I’m driving my car and park in a disabled bay I will get filthy looks – even when displaying my badge before I get out the car. Young person, sporty-ish car, must be taking liberties, no actually I got my badge fair and square just like you did. It’s affected me in work too, once I told an employer that I was going to be late due to a issue with my knee condition and was told if this is likely to be a regular thing not to return.
I suffer with arthritis, an undiagnosed mystery eye ailment that causes panuveitis and corneal changes, cranial nerve palsy, neurological issues that currently do not have a unifying diagnosis, intracranial hypertension, depressive disorder, lipodermatosclerosis and humble eczema. It can get a bit overwhelming at times. Especially times when you have to fill out forms explaining what is wrong with you and what you can and can’t do. Repeatedly. And then to be made like you’re making it up, I feel like asking who on earth would make this up? So yes I claim benefits, I’m one of those. Laying about getting government hand outs. Well I did have a 2 day job once where I paid some income tax and nation insurance, so I think that eases my guilt a little bit, but let me tell you this I’m most certainly not living the high life on £40,000 a year like you read in the paper. I live in a 1.5 (well allegedly it’s 2) bed council flat with my Mum and Dad that we moved to after they sold their house when my Dad lost his job. We only just scrape enough money together between us to pay the rent because we don’t get housing benefit or council tax help, Mum gets carers allowance for looking after me so that counts as extra income. I can’t apply for any assistance to help us because technically I don’t live here. It’s an over 55’s flat and they agreed to let me in as I’m disabled, so of course I help with the rent out of my ESA where I can, but like I say technically I don’t live here.
This isn’t a sob story, this is life, for me and for millions of other people I’m sure but we just try and get on with it. I’m not saying it’s not difficult being in my mid-twenties and needing helping getting up, washed, dressed and even fed sometimes. Sometimes when I tell people about day to day living, or they find out, they often say I would never have guessed, you don’t look that bad. And I never know how to respond, should I be looking a certain way so I can silently alert everyone in the nearby area there is a disabled person approaching, or should I shout good and be challenging the idea of what disability looks like and raising awareness of invisible disabilities? Either way I’m likely to upset someone and I’m too tired for that, I’m too tired for most things. Being tired is the worse symptom of all the conditions, no it’s not the most painful and no it doesn’t involve the most invasive treatment, but it ruins my life all on it’s own. Only people who have suffered it can relate and that makes it hard, you want to share the weight of the sheer exhaustiveness with someone and they reply – yeah I’m a bit sleepy too.