And just when I was all excited that I would have to fill in any more forms.
After just under a year of trying, failing, trying again and finally succeeding to get PIP, welcome to the sequel: ESA. Yup. My circumstances have changed, and now I have to make my own ESA claim. It’s like deja vu all over again. I’ve been sent a “Capability for work questionnaire” with the famous “Can you pick up a £1 coin” question, I have my sick note from the doctor and I’ll have not only a “Capability for work assessment” but also a “compliance interview” (because I’m going from being on someone else’s ESA claim to going onto one of my own and apparently I have to Do That The Right Way).
Are you ready for months of fun exciting blog entries about my third trip through the wilderness with the Department for Work and Pensions? I know I am!*
*At this point I’d like to personally thank the Department for Work and Pensions for giving me months, nay YEARS of material to blog about. I couldn’t have done it without you.
Ok my text wasn’t quite worded like that but the sentiment was the same. Yup, I got PIP. After not having it since August, after two applications two medical assessments and a tribunal, I finally got my disability benefits back. My Personal Independence Payments can start doing what they’re supposed to be doing – giving me personal independence.
We are very relieved. And I am very relieved I can stop thinking about it for a year (I don’t know how long or what level it’s been awarded at yet) because I am now so very, very bored of talking about it.
It didn’t quite break me but it got pretty close. Look back at my PIP tag for the whole gory story but it’s not an unusual one, or even a particularly bad one in terms of the fight to get PIP. Even with the BS I’ve had to go through over the last 10 months, I’m still one of the lucky ones. My story is just another one of the thousands like it. Getting disability benefits is a fight, it shouldn’t be but it is. At least I get a ceasefire for a year.
I am awaiting an envelope, and that envelope will tell me when my ATOS assessment for my third PIP application will be. Third application, third assessment. I should be a pro at these by now.
When I had my appeal hearing back at the beginning of March, they asked me about my graduation. Not being at uni, or work, the actual ceremony. Did I go there myself? Were my family there? Why? Did I have to walk up steps? Did I use my sticks to walk across the stage? Did I talk to anyone? How did I get home?
Not gonna lie, about five minutes of questioning was based on around thirty seconds of my life.
My graduation was a very special day. It was not a “usual” day, and on that day I did not do my “usual” activities. I wanted to look nice, I wanted to enjoy myself, I didn’t want to walk across the stage with my sticks and I wanted to talk to people. Because I was so determined not to miss it, I accounted for days before and after it in order to save energy and then have time to recover afterwards.
I don’t want my full-time job to be “ill person”. Dealing with it is a full-time activity and it’s not going to disappear but I don’t need to have that as my primary identity: “Emsy, The Ill Person”. But anything I do that puts my illness into the number two spot (anything that requires me having to act like a regular human being and do things like “get dressed” or “leave the house”) is questioned by ATOS as a signifier that I’m not actually ill. If I don’t walk around (well, maybe not walk because, ATOS…) with a placard saying “GUYS I’M ILL” then I’m not ill. Or, I’m not ill *enough*.
I want to deal with my illness in my own way, in the way that is the best way for me and my (physical and mental) health. But if I do, I won’t be believed. At what point am I going to have to sacrifice money I need in order to have a sense of self-worth I also need? Because apparently, I can’t have both.
My PIP tribunal is in a week and I am exhausted. I am now also very aware of the cost that goes into a tribunal, both monetary and health-wise. I am one person, with one PIP claim, and it’s taking an army of people. And an army of people come with an army of costs.
I received the “bundle”, that is all the documents the DWP hold about you as part of your PIP claim, back in January. My particular bundle consisted of 188 photocopied pages. Times that by two as a copy of all that is also sent to whoever’s representing you at tribunal, if anyone is. And then the DWP has to mail both of these reams of paper.
I am immensely lucky to have a local law centre that is very good at PIP tribunals. Everything I receive from them, I receive for free. An initial consultation, time for my representative to read through my bundle of papers, a longer interview, more time for him to write up witness statements and finally their time spent at my tribunal representing me. Legal time is expensive time, and someone somewhere has to foot the bill.
And the tribunal itself. A judge, and two representatives have to spend their time conducting my tribunal. The court has to be booked and paid for. Travel costs, more printing costs, any other of a myriad of administration tasks that have to be done. The filing of court papers. The sending out of the letters instructing when the tribunal will be. This is all expensive stuff. Someone has to pay for it.
And of course I’m hardly the only person in the country who has gone to tribunal for their PIP claim, very very far from it. According to Benefits and Work the number of PIP appeals in the first quarter was 14,751. This is costing the country a fortune.
But the other huge cost of a PIP tribunal is that it makes people who are already sick get sicker. I’m so, so tired of doing this and I know how to do this. I know how this system works and I know how to fill in forms and how to say everything the way it needs to be said. I have help and representation. And I’m tired. I can say categorically that the PIP appeal process is designed to be as difficult and as exhausting as possible, in order to make people who already struggle just give up completely. It’s designed to be a big, impassable mountain.
My tribunal’s next week. I’ll keep you posted.
This morning I woke up, lay in bed for a little while on my heat pad in an attempt to warm up, then got out of bed and went to make breakfast. I ate my porridge in front of my computer as I often do, and took to Twitter complaining that as it was raining I had lots of pain (also as I often do!) I ate my breakfast and took my medication, which included Naproxen and Tramadol. I complained on Twitter a little more and empathised with others also experiencing a chronic pain flare up in this rainy weather.
My best awake time is in the morning. So I began doing some work as I knew after lunch my brain would turn to mush and I’d probably have to go to bed for a while. My husband went to empty the postbox and lo and behold I had a brown envelope.
My PIP reconsideration hasn’t been successful, I’m going to have to go to appeal.
I don’t even have the energy to feel massively angry about it. I’m just tired of it. More paper, more assessments, more trying to prove that I am actually ill and I don’t sit around for most of the day doing very little because it’s fun (it’s not fun). What can we do other than go “righto then” and get on with it. Anything else requires too much energy and I don’t have much of that right now.
So. Righto then. On we go.
Last time I wrote about having my Personal Independence Payment assessment I said it felt like an exam I had to pass. As it turns out, this time I seem to have failed.
Yep, after doing my renewal application for my PIP, I was declined. I was half expecting this anyway but it still came as a shock. So now comes the mandatory reconsideration period and the appeals process. I’ve also requested a copy of my assessment to see if it’s as comedic as the last one was.
As an ill person, the expectations the DWP have of me are a bit confusing. I’m told that in order to be a productive member of society I have to work, that working is the best option for everyone and that their aim is to get everyone working. Yet, as soon as I try and be productive and proactive, I’m told I’m not ill enough to be receiving any help. Which means you cannot win. You cannot be productive while also being ill as the DWP don’t have a box for that. You can’t be a professional, an educated person because if you’re able to be educated and have a profession then you’re clearly not ill. The truth, as it always is, is far, far more complicated than that.
Me doing an MA does not means I don’t still have chronic pain. The fact I can write a blog entry doesn’t mean I won’t have to go to sleep for the afternoon due to chronic fatigue. Reading a book doesn’t mean I don’t need my pain medication. You’re told to be productive yet that means you’re not ill. If you’re ill you’re told you have to be productive.
**DISCLAIMER: All the opinions and experiences in this post relate to me. Everyone’s experiences of disability and illness are different and no two people will have the same views, opinions and feeling about the topic.**
Next month, I won’t have worked for two years. It really doesn’t seem that long but it also really does seem that long. I wouldn’t be lying if I said that I don’t know what happened to 2014 and 2015 – a year spent working out what my illness does and how I could live with it, and another year trying to get myself back to as “normal” as I could be while still making accommodations for my condition. Time moves fast when you’re doing very little, it seems.
I’ve had two ATOS assessments in that time, both for PIP. The first one was kind of a blur – I’d been ill for a few months, I didn’t really know what was going on, what medications I should be on, how I was going to pace myself, all the things that you eventually pick up and learn the longer you live with being ill. My second assessment was last week and it was a different experience. Not because it was conducted at home rather than at their offices, or because the questions were different (they weren’t) but because I’ve lived in this body with this condition for nearly two years and I know it a lot better now.
I’ve gone through different stages of dealing with being ill. For a while I was just “ill”. One day I could do something, then over the course of a weekend I just got ill. I can remember the weekend clearly as the Monday was the final time I went into work. Then you start looking for reasons and ways to help. Diagnoses, medications, pacing, reducing the amount you achieve in a day. Resting a lot. Sleeping a lot. Getting into the groove of “being ill”.
And then once you’ve got the rhythm of your illness – you’ve worked out that your big flares usually come a week after the event that triggers them, that if you spend the morning in town you’d better not plan any activities for the afternoon, that if you’re going to need to be clean and showered for some reason you’d best plan that into your previous day (also your definition of “clean” gets reeealllly loose…) – you start to live with it rather than fight against it. This doesn’t mean everything is roses and happiness, far from it. You get days of pain and days of exhaustion, you can’t drive as far as you used to or walk as far or be able to use your brain and think after 3pm. But you have what I called my “new normal” – and you forget that this isn’t other people’s normal.
I’ve found myself stuck in a really bizarre place. I’ve just finished a postgraduate degree and I’ve worked for ten years in a profession (granted the profession has been ripped to pieces by the Tories but I digress…) and so my desire is to work, because I love my profession and I want to be able to practice it. But then, you’re put in a position with your ATOS assessor where you have to describe in minute detail how you can’t always cook your own meals, how sometimes you don’t have the energy to wash your own hair, how someone else has to come in and do your vacuuming for you. I’ve found it very difficult to take both the realities of being a professional, and of someone who is ill and needs assistance and help with everyday tasks, and apply them to the same person – me. How can I be both those people at once?
And I know where this confusion comes from. Having an ATOS assessment makes you constantly second-guess yourself. Can I walk further than I said I could? If I can open a can now does that mean I can actually cook? Am I better than I was, am I more able than I think I am, am I being lazy? The constant second-guessing and the need to prove that you’re ill or disabled makes you stand face to face with the worst bits of your illnesses. I can’t leave the house for days, I can’t wash my hair more than once a week, I can’t cook my own dinners. It’s almost impossible, to me at least, to take that view of myself and pair it with “I’m a professional with a postgraduate degree and the desire to work”. The DWP make disabled and ill people justify the worst of themselves and then they expect them to “pull up their bootstraps” and make the best of the situation. After you’ve been repeatedly shot down by churning out all the reasons your mind and body is unable to work properly, under the fear that you won’t be believed, it’s a difficult task to turn that around and be motivated and positive.
But hey, maybe that was their plan all the time. Motivated and positive ill and disabled people get ideas and opinions and the means to express them, and we can’t be doing with that.