I’ve been wanting to write this blog for a while, but my health has been so up-and-down that I’ve just never managed. I promised Karen, the creator of Conscious Crafties that I’d do it, though. So with that commitment, I have pulled some energy from up my bum and put pen to paper!
It feels like I’ve been sick forever, but it’s really only 18 months. I mean, yes, Ehlers-Danlos Syndrome is a genetic disorder, so I’ve technically had it my whole life… But I was doing alright, trundling my way through life, until, as if from nowhere, my entire life was hit by a thunderbolt of pain and destruction. I never thought I would be disabled. I always thought that my life was my choice. It was but a mere decision of whether I wanted to do a specific job, have a family, exercise, eat… wash myself… leave the house… walk. Yep. I never thought that there would be days where I couldn’t physically manage to wash myself.
Every able bodied person seems to grasp the concept that being disabled/chronically ill means you don’t have a lot of money, but that’s about the limit of their understanding when it comes to illness and finances. I don’t blame them, because until it applied to me, I didn’t really have a clue where sick people get their money from. Benefits, right?
It’s not easy to get benefits in the UK. Channel 5 with it’s “benefits p*rn” might make it look easy, but it’s soul destroying, physically exhausting and makes you doubt your self-worth. Thankfully, my experience of claiming Personal Independence Payment (PIP) has been reasonably straightforward – but I did have the good fortune of seeing a “healthcare professional” with knowledge of EDS… And she also seemed to still be in possession of her own soul, which had not yet been claimed by ATOS.
My luck ran out when it came to my claim for Employment Support Allowance (ESA). This is the benefit you are supposed to receive when you are too sick for work. Except, the department for work and pensions (DWP) have proclaimed that if you can move an empty box or you can use a smartphone, that you are fit for work. I mean, I sort of see their point… But if anyone can find an employer who doesn’t require me to be reliable, awake, coherent or able to use any of my limbs at a set day/time/week then send them my way! If it wasn’t for the good old “Bank of Mum and Dad” and my partner (by some miracle) dodging redundancy throughout the plummeting oil prices, then I’d have been up the proverbial creek without a paddle. I really don’t know what someone in that situation is supposed to do. Starve?
However, help is out there. I contacted my local MP about my situation. I spoke about how I’d been treated by my GP and hospital staff, benefits, my need for a wheelchair and more. He contacted the health secretary, the CEO of NHS Grampian and Aberdeen Council. I won’t lie, the health secretary pinged back a blatantly pre-prepared response that was completed by cutting and pasting info on EDS from Wikipedia. Helpful. NHS Grampian made all the right noises and asked that I (with my very little energy) compile an official complaint. Yeah, sure. That’d take hours, nay, weeks. I’d need to request my own medical notes from my incompetent GP practice who would require that I jump through yet more hoops and give them a wad of cash… It just isn’t going to happen anytime soon. I can’t even wash myself.
However, the council have been great. I was referred to the financial inclusion team who are taking my ESA application to a tribunal. Without this help, I, like so many other sick people, would not have the energy reserves to challenge the ridiculous decision that I’m fit for work. Even the council employee thought it was ridiculous that in one week I was awarded the highest disability rate for PIP and simultaneously been told I score ZERO points for ESA and am fit for work. It’s a joke.
Also, there is a massive problem of people parking their cars across the pavement on my street. Following a seriously cheesed off e-mail and photographic evidence from myself, Aberdeen Council are now presenting these morons with £60 fines. VICTORY IS MINE!
Had I not had the financial support of my family, I don’t think the council would have left me to starve. They are keen to send someone to check the energy efficiency of our (privately rented) flat and to help us look at our energy provider to make sure we’re getting the best deal. All of these things consume spoons at a rate of noughts, so I’m grateful of a professional absorbing some of this burden.
What I suppose I’m saying is, the system is broken. PIP and ESA are notoriously difficult to claim and the DWP like to make disability as financially crippling as possible. BUT, there is help. Ask for help. I cannot put into words the weight that has been lifted in knowing that someone is fighting my corner. Knowing that the people parking across the pavement and blocking me in my wheelchair had their day ruined by a £60 fine also offered a little feeling of utter jubilation.
Don’t give up. If you know that you are entitled to it, fight for it. You shouldn’t have to fight, but you will have to. It’s not fair and there will be days where you feel like you can’t go on. On those bad days, look after you. You CAN go on. But, get help. It’s easier to carry on when someone with experience is holding your hand through it all.