Most disabled people and chronic illness sufferers know the many pitfalls of government support. No matter where on the globe you are, it feels impossible to make any headway. While all the time you're drowning in stories of ‘benefit scroungers' in the system--honestly, I don't even know how they do it.
As a UK citizen, I first applied for ESA (Employment & Support Allowance) but was rejected for reasons of means--A.K.A I have some savings. Next, I tried for Personal Independence Allowance or PIP. PIP was introduced in lieu of Disability Living Allowance and aims to support those who have difficulty completing daily tasks.
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As someone who spends most of her time in bed, waited on by my extremely patient partner, all involved in my case were pretty sure of my success.
I suffer from anxiety, depression, Fibromyalgia, Endometriosis, IBS, gastritis, and hypermobility. Not everything is bad in all the time, but something is always bad. I take a literal handful of medication every morning and several other doses when needed. I attend regular counseling, doctor appointments, physio and acupuncture sessions. I can't sit at a desk for more than a few hours to work. I don't think it's an exaggeration to say that I am ill.
My health assessment lulled me into a false sense of security. The assessor chatted to me happily about my condition, even suggesting difficulties I might face that I hadn't thought of before. I'd claimed that my conditions affected every element of my life, and on average 5 out of 7 days were "bad days".
This is the response I got:
The assessment works via a points system. If you fall between 8-11 then you are eligible for band-one support, if you score more than 12, then it's band-two.
I understand there are people out there who are sicker than me and need more help. If I'd received a score or 6 or 7, and had just missed out, then I wouldn’t feel so bad.
But no, I received a score of zero. According to the lovely benefits people, my health problems do not impact my life in any way.
Now, as most invisible illness sufferers know, a lot of time is spent believing it's all in your head. You punish, hate on, and blame yourself for not being able to magic your problems away through pure will power. This sentiment is reflected by a worryingly large percentage of people with whom you come into contact--be it employers, friends, and even Doctors.
I've gradually developed a resilient skin to those who chose to solidify these ideas, but the Sarah-of-a-year-ago would have read my evaluation as a cue to slash my wrists and down my many pill bottles of medication--because it confirms that niggling thought: I'm not ill, I'm just pathetic and useless.
Did my PIP case worker even consider that this might be the case?
Fortunately, I now have a platform to share my disgust, instead of internalizing it to detrimental effect. But there are others out there who are not so lucky. If this letter reaches any DWP employees, then I hope it makes them reconsider their approach.
If not, I pray it's read by someone who has been made to feel equally as worthless and hopeless as I have been. And I hope it stops them from opting for that drastic and final solution: the one that seems like the only option when you're backed into a corner by those who claim to offer ‘support.'
Plus, I don't even have time to go into the thousands that have been deemed 'fit to work', who have subsequently died from their ailments.
So here goes:
“Dear PIP Case Worker - the one who knows me better than I know myself,
I hope you believe me when I say I do not want to spend this time justifying my illness to you. I already spend quite enough of my life trying to justify it to myself. To be honest, it's overwhelmingly embarrassing to be begging and pleading with a virtual stranger just for the right to live and function independently.
I said my health conditions affect my life; you decided that they do not. Aside from the obvious - that you have never met me and have no other evidence to base this on other than what I wrote on my form - there are a few things I'd like you to explain to me.
Let’s use my PIP claim process as an example. If I am unaffected by my problems – or not-a-problems, as you say – then why did I have to get my boyfriend to finish off writing my application for me? I’m sure you noticed that the handwriting changed half way through – no? I told you it was because my fingers were hurting too much to write. However, I’d love to hear your explanation, since you clearly have so much more insight than me.
After receiving my health assessment appointment, I had to ring up to change it. I believe you should also have this on your record. The reason I stated was that I couldn't travel to a different city in the early morning, due to my symptoms being worse at that time. I also asked for a day where my partner could attend with me, as I needed physical support to get the bus by myself. Fortunately, thanks to you, I now understand that all of this is untrue. However, I would be grateful if you could let me know why I bothered making that change at all. That’s if you can spare the time to depart your apparently omnipotent wisdom on me.
Maybe you decided I am completely healthy because I don’t have any equipment to help me around. I mean, I’d love a stair lift and walking stick, but – in case you hadn’t realized – I’m really quite poor because I’m not (I know you don’t agree) fit to work.
I guess the 100s I spend on train tickets because coaches give me bladder spasms doesn’t count as a necessary cost (I should just travel in screaming hysterics of agony to save money – right?)
Similarly, in regards to all those diets, the doctors have me on that require me to spend more on specific foods and supplements. I can only assume that you regard medical advice as a mere suggestion. I'll have to keep that in mind when it comes to the money I spend on medication as well – thanks for the tip.
Perhaps the crux of the problem is this: I'm trying to get better. I was foolish enough to admit I'd made it out of the house alone for the first time in months; I'm spending heaps of money that I don't have on potential cures; I'm not willing to sit down and accept my fate is to spend almost every day in bed. My bad.
I would go into my mental health, but if the evidential letter I provided proving I'd got full marks on the anxiety/depression evaluation wasn't enough, then I can't imagine anything I say is going to change your mind. Guess I'm just such a good liar that I've even managed to foil the NHS into supporting my claim – maybe an evil, manipulative villain could be my next attempt at employment? You clearly think I have the necessary skills!
So anyway, I guess I better thank you for enlightening me to the fact that I am, actually, 100% healthy. I hope you can feel good about this as you walk home tonight without your legs seething in pain and buckling beneath you; when you eat your dinner without throwing up and lay and easily drift into sleep. I hope you feel pride at rejecting one more benefit scrounger when you receive that lovely paycheck at the end of every month. The one who assures you a place to live, food on the table and a chance at life.
All of which are things I do not have and, according to you, I do not deserve.
Not yours and with absolutely no thanks,
Sarah”
I know the decision to reject my claim had nothing to do with my problems; it was solely down to the quota of cuts the welfare state is facing. However, it's time that those involved accepted how these bureaucratic decisions have personal, real-life consequences.
I honestly don't know how I'm going to survive now, and I am one of millions in the same situation.
