At the moment, I’m not well enough to work. In the past I have managed both part time and full time jobs with my anxiety, and worked both 9-5 hours and shifts, in busy places doing physically demanding and customer facing work. Having a mental illness has not stopped me from working, and I’m confident that it will not stop me in the future. Right now, however, it is. It’s the kind of thing you want to keep to yourself and don’t really want to tell people, but it’s also pointless trying to do that because it won’t work! Accepting that this is how it is doesn’t mean I’ve resigned myself to the situation and won’t get back to work, it just means that these are the circumstances at the moment, and denying it or pretending that things are fine won’t get me anywhere. I wanted to explain a bit about how it got to that point, and what I’ve done to stop myself going bankrupt!
So in around May last year (2015) I started getting panic attacks. I hadn’t had much experience of them before (thank god) but they reared their ugly head with vengeance and tipped my world upside down. I’d had quite a lot going on and things weren’t great, I was just about coping with my generalised anxiety; the unrelenting, racing, weird and scary thoughts, the shaking, the constant exhaustion, every tiny worry turning into the Mount Everest of catastrophic thinking – I could manage to keep all that at bay and get through a day at work, but the panic attacks got me. They’d creep up and I’d feel them coming, try to stop them and always fail. My heart would race, my head would spin, my vision would blur, I couldn’t hear properly, everything was loud or weirdly muffled, I couldn’t concentrate on anything except how horrible I felt, I’d usually be 100% convinced I was about to pass out. The only thing that seemed to stop them was running away from whatever situation I was in. So when I was at work and I had one, I tried my best not to run away – because that doesn’t make for a very productive working day – but I just couldn’t get a handle on them. It had taken me around 6 months in that job to feel comfortable because of the anxiety (nothing to do with the actual job or the people I worked with, just me!), so it was already an effort but I began to really dread every day; sometimes driving to work in tears at the thought of a day full of trying to concentrate on my work and appear normal whilst my brain was busy doing its own anxious thing at the same time. I really loved the place I worked and I was determined to stick it out, but these panic attacks beat me and I kept having to leave work and go home halfway through the day, sometimes after less than a couple of hours. Eventually they got the better of me and that was the job gone. The family I worked for were incredibly understanding, but I was fuming with myself for ‘giving up’ – though there was very little I could do at the time, it had spiralled into a panic disorder within a few weeks and I was, to put it lightly, a bit of a mess! It wasn’t so much a decision to stop working as something that I didn’t have much choice in. But I did make a conscious decision that forcing myself to go to work, and ending up coming home after a few hours almost every day, was not helping. It was making me feel so much worse and knocking my confidence, so I decided that enough was enough and I needed some time to get myself together.
I was optimistic that I’d get a handle on stuff soon and get back to work, but as time went on I realised that that wasn’t going to happen. When you struggle to leave the house, a day at work seems a completely overwhelming task. I remember looking on the government website to find out what to do if you can’t work because you’re not well, and it all looked so damn complicated… and I remember thinking that because this was ‘all in my head’ it wouldn’t be taken seriously and they would think that I should be in work, so I left it. I’d been living off my savings and the funny thing about money is that when there isn’t anything going in to your bank account, it empties pretty fast! It got to the point where I was going to have to do something about it so I called my Dr and told her the money situation was getting desperate, and I was officially signed off. But when I asked her what I needed to do now, or what I could claim, she didn’t know. Nobody seemed to! In the end it was the Citizen’s Advice and Mind websites, and a helpful email response from Mind, which came to my rescue.
Because I wasn’t employed at the time I couldn’t claim statutory sick pay, so (as far as I could tell) I needed to be claiming something called Employment and Support Allowance (ESA); which is what you can claim when you’re not able to work due to illness. Armed with my sick note I rang the Department of Work and Pensions (DWP) and after the obligatory forever on hold I got through to a very nice man who was really kind. My worry was that I’d feel like I was being judged, and they’d instantly declare ‘don’t be so ridiculous, there’s nothing really wrong with you’, but it didn’t feel like that at all. They ask similar questions to when you make a claim for jobseekers allowance, and it took about 45 minutes – the usual marriage status, where you live, who you live with, savings, bank details etc. I asked if I could claim from earlier in the year and he said that they can back date it for up to three months. They don’t really ask about your illness, except what it is. He explained that they would send a ‘Capability for Work Questionnaire’ (aka. ESA50 form) which I would need to fill in and send back – this would be all the more medical questions; details of what you can and can’t do. He also gave me the address to send my sick note to so I could get the ball rolling quicker, and gave me dates of when all the paperwork would arrive by; including the letter with the decision.
A few days later I got a text from DWP saying they were processing my claim, and another one saying they’d received my sick note. I’d stopped checking my bank balance by now because you know, if you don’t look then it isn’t happening, but I decided I would have to do a tiny bit of essential Christmas shopping right before Christmas and looked at my bank account. At first I couldn’t work out what had happened, I was out of my overdraft and I had no idea how or why. Then I saw a payment from the DWP, which must have been backdated for the three months. This sounds a little dramatic but I genuinely burst into tears, like I was on Eastenders. I actually sobbed. I didn’t realise that having no money, and no way of earning any money, was having such an effect on me. But the huge relief I felt when I saw that money in my bank showed me that yer, I was probably pretty worried about it! More than anything I was worried about my family having to support me. They do SO much for me at the moment; they’re like my personal shoppers and chaperones, but there is only so much financial support they can give me. This little bit of independence is a life changer.
The letter arrived a couple of days later saying that yes, I was able to receive Employment and Support Allowance. I am getting £73.10 a week, which is paid into my bank every 2 weeks (like jobseekers). I completed the Capability for Work Questionnaire and sent that back, and I may have to attend a Work Capability Assessment, which I can only imagine will be a positive and life-affirming experience…….. But I guess it is what it is.
There’s no guidance that comes with the forms on how to fill in the Capability for Work Questionnaire, and as it’s a government form I’m sure you can imagine how clear and easy it is to understand……….. So I did a bit of googling to find some guidelines. As these forms seem to change quite often some of the information online is outdated in terms of the exact questions, but is still relevant – Mind has a good page here.
The first half of the form is for Physical capabilities and the second is for Mental, cognitive and intellectual abilities. This was reassuring in itself because, even though I live with it and know how much it affects me, I still worry that mental health problems won’t be taken as seriously as physical ones when it comes to something like this e.g. a legitimate reason for not being able to work. The first half was irrelevant from me so I filled in the second. Questions included things like “Can you cope with small changes to your routine if they are unexpected?”, “Can you leave home and go out to places you know?”, and “Can you meet people you know without feeling too anxious or scared?” It turns out that you’re assessed with a points based system. It’s like the opposite of a job application – you have to convinced them how NOT suitable for the job you are, and then they score you on your inabilities. It’s dehumanising and basically a bit fucked up. The more incapable you are, the more points you score, and you have to score 15 or above to ‘win’ ESA.
I’ve only been claiming for a few weeks, but I can already tell you that £73.10 a week is NOT a financial incentive to cheat the system. Trust me, I would NOT be claiming this is if I felt I had any other option. The same way that you want out of jobseekers allowance as soon as you sign on, I don’t want to be doing this. It’s been a relatively simple process, and not as difficult or scary at it first seemed, but I still wish I hadn’t had to do it.
I am lucky to be able to live at home with my mum, so if I’m not able to pay rent or have enough for food one week, then I won’t go homeless or hungry – but I know that a lot of people don’t have this luxury. These two articles demonstrates how devastating it can be if you have your benefits sanctioned when you have mental health problems:
The recent government attempt to cut ESA because they believed it would act as a financial incentive is the most ludicrous thing I’ve ever heard. £73.10 is enough to keep you afloat, it is not enough to make you think ‘oh yer I’ll definitely stay on this forever and never go back to work, I’ll be sooo rich…………….’
I am waiting to hear if I get called in for a face-to-face assessment with a healthcare assistant, who will ask me a series of questions and also ask for real life examples of the way my anxiety affects my everyday life. They will then send their recommendations to a ‘decision maker’ who will make the final decision on whether they think I’m fit to work or not. I can’t say I’m looking forward to that, but we will see what happens.
So that’s the stage I’m currently at. I 2,000,000% wish that it wasn’t like this and that I was able to work. The novelty of being at home wears off extremely quickly! I am desperate to get back to work and am confident that I will be able to, but I’m not sure when that will be. I never, in a million years, thought I would be too unwell to work and be claiming this benefit, but you never know what’s going to happen and it’s being an absolute lifeline for me at the moment. There is a temptation to feel very sorry for myself, and very ashamed that I’m not able to support myself financially and am depending on ‘hand outs’; but that’s not how I want to look at it. Every now and then I feel like that, which is allowed, but this isn’t my fault. I have as much control over getting ill as anyone else; practically none. Anyone could end up in this situation for a huge variety of reasons, and of course I wish that no one did, but it happens. Also, a huge number of people I know, myself included, have been on jobseekers allowance at some point, and this is no more of a ‘hand out’ than that is. There are plenty of checks and boxes to tick and things to prove before you get any money, and when you do, you’re hardly rolling in it. It’s there to support you. A big part of me is embarrassed that this is the case, but if anyone I knew wasn’t able to work because they were too unwell then I know that the last thing I would be doing is judging them, and I remind myself of that.
If you have any questions, please feel free to ask!
Today’s song of choice, courtesy of Curtis Mayfield, because this post was mildly miserable and now I need to dance around the kitchen.