Being visibly invisibly ill.

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.


A lose-lose situation: the DWP’s Catch 22.

2015-09-23 13.05.22Last 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.

No win.


PIP assessments and me: stuck in the middle with ATOS.

**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.


ATOS and my new normal.

2015-08-21 09.55.42So, once again, ATOS and I are going to spend an hour hanging out together. Although this time they’ve invited themselves round to mine. They’d better not be expecting a finger buffet.

It’s strange, because obviously I have a lot of things to say about this. I have to go for another assessment after having been on PIP for just a year which really wasn’t expected, but they were a hell of a lot faster this time than last I’ll give them that. I’m going into this one having already had one assessment and so I know a bit more about how the process works, but I feel like I can’t talk about much of that at the moment. Because the internet has ears. And the paranoia of ill and disabled people is high. And I’m worried that my concerns about my assessment will be taken the wrong way. So instead, I thought I’d talk about something else.

I got ill almost two years ago now. It seems like yesterday and a lifetime ago at the same time. When I look back at how I was before I got ill, the work I did, the activities I did, how busy I was, it definitely seems like another life. And the problem with that is, the way I am now has become normalised in my mind. And so I forget that I still do things differently in order to accommodate my condition because I’m now not aware that I do them.

I don’t go into town because I know it’ll make me tired and I have things to do at home. I have to plan my showers days in advance sometimes, to make sure I’m actually, y’know, clean but to make sure I have time to rest afterwards. I get tired in the afternoons. I get pain and fatigue when it rains. I take strong painkillers, I don’t clean my own house, and just today I vetoed a trip to the supermarket at the end of the road because I felt in too much pain (even though I would’ve driven there rather than walked).

But that’s now my “normal”. I do all these things without thinking about it because it’s habit. Which worries me that I might miss them when I’m talking to the ATOS person.

Last time I said it felt like an exam. So I guess it’s time to start revision.


And so it begins again…

I spent more than half of 2014 blogging about the ongoing saga of my PIP application. I first applied in January and through a complicated form, a poorly-recorded assessment and nearly nine months of waiting I finally ended up getting a disibility benefit.

Twelve months later and it’s time to go through it all over again.

2015-07-20 13.33.46Yep. The form arrived. I have to do the whole sorry deal this year too.

Yes I have the photocopies of the last form. Yes I still have the Word file with all my written answers in, and copies of my letters. Yes I know they hopefully won’t ask me in for another assessment.

But still. Another few months of wondering how long it’ll take and if I’ll actually be re-awarded.

I’m still exhausted from the last time.


DWP assessments – a pass or fail exam.

The building I went for my PIP assessment in is probably the most inaccessible building I’ve ever been in during my 32 long years on this earth. ATOS in this area will do home assessments for people with mobility issues, which is good as the entrance has three heavy doors you have to be buzzed through, the tiniest waiting room of all time and the tiniest assessment rooms.

PIP assessors are a medical professional of some sort – OT, physio etc. which means the chap I saw should at least know a bit about what’s going on. He was really nice, which was good, but I felt like the assessment wasn’t thorough, and just went through everything I’d already written about in detail on my form. He asked about what conditions I had, the medications and their side effects. He was supposed to ask about a “typical day” but in fact he only covered eating and drinking and didn’t ask any more. The quote of the day was: “I need to write down an explanation of what this condition is because the person reading it won’t know about it”. Confidence boost right there!

Then there was a “physical” which was composed of your usual basic physical tests – touch your toes, squeeze my fingers, push against my hands and so on. If I’d have applied with a mental health condition I’d be quite confused by this point.

I did take someone along with me – my mum – who took notes (she didn’t ask if she could but she wasn’t stopped). The ideal person for me to take should’ve been my husband but a) see above re. wheelchair accessibility and b) it would be a foolish idea for me to walk into my PIP assessment with someone who is more disabled than I am.

It was exhausting. Towards the end I just couldn’t get all my words out. I missed so much. I feel like the right questions weren’t asked. I feel like I wasn’t enabled by the assessor to make sure I explained everything.

It felt like an exam. It felt like I should revise, make sure I can remember everything, make sure I answer the questions with the right answers. I felt like I was being tested, and I would come out with a pass or fail. Because the system is set up to make us fail. It’s set up so that we feel like we’re having to say and do the “right” things to be able to pass the PIP exam. We have to prove our disabilities, our illnesses. And rather than a system designed to make sure people receive the support and help they need, rather then a system that will hold your hand and guide you through with your best interests at heart, it is designed to put you on trial. To say “prove it”. And even when you do, it doesn’t always believe you.

I’m currently working on the assumption that I’m going to have to appeal. I figure that way, if I am successful first time it’ll be a nice surprise, but I’m being realistic. But this phase is done. Now I wait for the brown envelope with the PIP exam results in.


Well that escalated quickly…

It’s that time again…my six month PIP-iversary! And what did I get as a kind gift?

An ATOS assessment. On Monday morning.

2014-07-11 11.11.27

ARGH!

To explain: I called the lovely DWP this morning as my application has now passed the golden 26 week mark and I was finally allowed to talk about it to another person!

“Hmmm” she said, “we sent your application to ATOS in February, you’ve not heard anything?”

“No” said I.

“Ah” she said. “Do you want to call them and see what’s going on?”

“Not especially” I thought. “Yes” I said. She gave me a phone number, so I called ATOS.

Who had a cancellation for 9am, Monday morning. Hurrah! Oh god…

So, now I have my ATOS assessment for my PIP application. Have roped my mum along into being my transport plus an “advocate” while I’m in the appointment – I need someone else to remember stuff for me. Ideally I’d take my husband but in this instance he would not be a good person to take. Why?

Because he uses a wheelchair, and I can’t turn up to my PIP assessment with someone who is more disabled than I am. ATOS are famed for making ridiculous assumptions, and seeing me as the “less worse off” one would not count in my favour. So, no husband on this one.

So that’s the situation. Seems to have gone from standstill to full throttle in the space of no time at all. I have, at least, got the very good guidance notes from Benefits and Work so I will study them this weekend, and revise for my assessment.