Within An Hour Of Getting A DWP Personal Capability Assessment I Was Self Harming-Welfare Reform

Three days ago I received an Incapacity Benefit PERSONAL CAPABILITY ASSESSMENT (re assessment form), within an hour I had started self-harming again, something I had managed to not do for over a year. I cried solidly for 4hours, got one hour sleep despite being exhausted. The next day I was frequently bursting into tears, could hardly eat and was self harming again, that night I got 3hrs sleep, tonight I have had none….coincidence ? I think not.

I have ME/CFS in the ten years since I have been ill with it, my general health & fitness is worse, thanks largely to a dismissive GP(he fully accepted I have ME but always dismissed any alternative approaches(diet, supplements, very low dose anti depressants), any US research, and passed me off as a ‘psychiatric case’ this lack of support is mentally damaging & tantamount to abuse. Though I expect it is just a lack of understanding that even when a GP can’t ‘fix’ it, they can go a long way by being caring & supportive). Along with government & media vilification of those who are long term sick, especially those like me with ‘invisible’ changeable conditions, life is becoming so stressful that I am very frightened about how far they will push me. I am currently seeking legal advice to help me through the DWP PCA re-assessment. But not being able to cope with phone calls is making it very hard to start even trying to find a Welfare Rights Adviser. I get so distressed on the phone, trying to be ‘heard’ that over the years, I have found writing the safer option.

The friend who came with me last time, has said she will come again if I am called for interview, but can’t get into her head that the new computerised test has no place for anything other than yes/ no answers, and that I desperately need her to be fully informed & proactive. With ME/CFS every day, every hour, every week, can vary hugely. As it does between different people. Over the years, you just about learn to cope by ‘living within it’. Living within it means identifying what helps, when and what does not. For me, it means eating well, and even, on the very few days a month when I can(many can’t) it means doing a bit of gentle exercise(though government policy seems to be full of mixed messages, ignoring MY NEEDS, & condemning me to a life of further preventable illness, through the fear of being branded a cheat.) It means listening to my body & letting it sleep when it needs to sleep & wake when it needs to wake. Sod everybody else’s timetable.

That way I can have some, miniscule quality of life. It often means learning to say no. So, if you are careful, it is more manageable. But still, even a relatively easy few hours out on a special occasion or just to get some sunlight takes a disproportionate amount of energy & you know you will have to make sure you rest adequately afterwards. Do that for a few days, you know, living by a ‘normal person’s timetable, and you are brought to your knees & left mentally very fragile.

That’s why for the last FOUR YEARS, I have spent Christmas alone mostly in bed ‘resting’, seeing no one. My family don’t live that far away, but to get there, due to lack of public transport I would have to be away at least three nights. In a noisy house, unable to properly ‘rest’ running on empty bursting into tears all the time. The stress in the weeks prior & the verging on suicidal ‘crash’ that would follow(leaving me very vulnerable & unable to cope with the slightest stresses when I got home, just makes it not worth the price)I’d rather be at home, unstressed, looking after me. It feels like shit to be so exhausted that, you are bursting into tears all the time. It feels like shit, knowing when you push yourself, to use more than you’ve got at the time without resting as & when you need to even slightly, you will end up with a low grade sore throat, possibly a sore mouth full of ulcers plus all the other day to day stuff.

In the last four months I have missed my grandmother’s funeral, & will miss my brother’s wedding next week. Do I sound like someone who can hold down a job ? The brutal truth is, I actually struggle to look after myself day to day, in the way I would want to & people would be shocked to realise just how it is behind closed doors. You cut corners everywhere, not because you don’t care but because you need to.
The problem is that, on the surface I ‘look’ healthy. When I walk down the street to the shop, you just see that, you don’t realise that, it may be 6pm in the evening and I’ve been trying to find the energy, to get washed or dressed since 6am. Or that I’ve had many false starts. Getting up to get showered, then realising it’s better to delay it for another hour or so, or just managing little bits of it. You don’t see that my muscles are burning, standing in the queue, or that trying to cross the road, the extra time it takes to process the visual info, between looking left & right, makes me hesitate as I can’t be sure if I saw it was safe to step out. You don’t realise my trip to the local shop is because, I don’t want to burst into tears in a supermarket at a busy time, overwhelmed by the noise, lights, people walking across me while I am trying to process the simple information on my list & work out where the item has moved to.

Simple things like Sainsbury putting all sorts of different apples in different places, & the loose stuff away from the scales, so it’s much harder for me to, retain the price info in my head, between products in order to make my choice. This is how cognitive dysfunction affects you. You take these things for granted as I used to. When you are running on empty (effectively on a day that is an ‘ok’ day) these are the things that make it so much more stressful. Do you know what it’s like to walk into a cold food section or passed a bread shop & suddenly gag because of the smell? It is ridiculous, most of the time there isn’t really much of a smell, or usually it’s pleasant but sometimes it just gets you.

I am NOT mentally ill, I have ME/CFS, a physical illness, but living with it in such a hostile, arrogant, dismissive, unsupportive environment, is having a serious impact on my mental health, let alone allowing me to use the little energy I have, when I have it to improve my quality of life.

The policy seems to be….that of , you say you’re ill, so we will make your life so full of stress that you will be certainly sicker than you were at the start of the process. In fact , let’s call it kill or cure. If you don’t get cured , we will incite you to kill yourself.