Where’ve I been? Getting ATOS-ed, that’s where

I realise I’ve not written here in about a month, quite possibly the longest pause in my blogging since YetAnotherLefty came into being a little over two years ago. I (perhaps vainly) imagine that my readers have been asking themselves where I am and when I’m going to get round to writing something again and while I don’t really owe you guys anything, I feel an explanation is due.

Quite entirely simply, the explanation is “I got Atos-ed”. Again. And it was humiliating and triggering and awful and it harmed my mental and physical health. Again.

I want to try to go into that and expose what it’s like to claim PIP and/or ESA (the two kinds of social security / benefits payments offered to disabled people in the UK). Every person I’ve described the process to in real life has been horrified. Sometimes I wonder if people just don’t know or just don’t WANT to know how their friends, family, neighbours who are disabled are being treated. I know people don’t want to think that it could happen to them – when the various changes to disability benefits in the UK started, I was CONVINCED that they were not relevant to me or to anyone I knew. I was very, very wrong. The illnesses that cause me constant pain and fatigue had already begun. The disabilities I’d lived with from infancy should have got me DLA/PIP if anyone had thought to apply.

For both PIP (a benefit that most disabled people qualify for and that is for people who can work as well as people who can’t) and ESA (basically a replacement income for those too ill or disabled to *seek employment*) you first have to obtain and fill in a paper form. On that form, you will be presented with lists of tasks and the option to tick that you either can or cannot do those tasks. And then you’re expected to write in minute detail exactly WHY you can’t do the things you can’t do and how much help you need and why you need that help and exactly which symptoms of exactly which condition(s) prevent you from doing the thing. For EVERY. SINGLE. THING that you can’t do. There’s about thirty pages to the form, and four or more tasks on each page, many of which have subheadings.
It’s a lot of writing, especially if this is your first such form. Oh, and the space to write in is tiny and they don’t actually tell you that you need to detail the whys and hows of every last thing you can’t do without help.

And then they make you back everything up with letters from doctors and carers and social workers and anyone with a title regardless of whether or not they’ve ever seen you at home.

And then they usually still insist on a face to face assessment. Which amounts to meeting a stranger who’s been given a Cliff Notes (think literal bullet points) version of what you wrote on the form in the first place and then questions you in detail about all your conditions and all the things you can’t do and precisely WHY you can’t do them, give examples of times you couldn’t do this, what would happen if you didn’t have the help you have, but WHY does X condition mean you can’t do Y task? how come you can do P but not Q?… the form all over again but with another person asking the questions and not especially caring about being sensitive or kind (in my last PIP assessment, I think we spent a whole ten minutes talking about my bowel and bladder problems and at least 20 on “But WHHHY does severe anxiety prevent you from mixing with people and going to new places on your own?”).
And then based on a report about the face-to-face (including, no joke, comments on whether or not you “looked anxious” in the waiting room) your medical evidence and the damn form, a complete stranger who you have never met, who has never observed you in person, decides whether or not you’re disabled/ill enough to be given a small but often life changing sum of money.

And I think readers of this blog are probably vaguely familiar with all of the above. I needed to spell out the background because what upsets me most about this whole charade, what explains why I become hazy and distant and slightly more mentally ill immediately before and a short while after a face-to-face assessment or a frantic couple of weeks writing the damn forms (every three to six months I have to do one or the other as I get both PIP and ESA)… is the effect this has on my (and likely others’) sense of self, my identity.
The forms and the system reduce me to a list of “I can’t x without y help because of p,q,r symptoms of z condition”. I experience my life – and my self – as a series of events caused or explained by my inability to do things. My brain processes experiences as potential examples for the damn forms and assessments. I feel like a fraud if I decide to take the pain and the consequences of doing something I really really ought not to do. I feel guilty about spending money because at any moment a brown envelope and a few strangers could take all my money away. I worry about that one picture of me on Instagram where I appear to be standing unaided with a baby in each arm – I know the reality is that I’m seated on a stool and there are two people just out of shot ready and waiting to take one or both babies from me as soon as the photo is done – I still worry about what it looks like.
The logic of the form – that one should be able to work and if you aren’t you better have a detailed explanation of precisely why – permeates my brain. I over-explain why I can’t or won’t do things to friends and strangers who would happily have accepted “I can’t” as its own reason. My depression latches onto things that I can’t do that someone my age “should” be able to do. I feel ashamed and scared to admit that I am “on benefits” and likely will be for the rest of my life.
On my “good days”, my depression and anxiety still interject to make me question if I even “deserve” to get paid to not-work (because anything even remotely like full time work would seriously harm me) and if my more expensive or frivolous purchases are justified given I don’t “earn” my money. On my bad days, lying in bed, my brain idly writes new paragraphs for the damn forms.
The system for getting these payments leaves me constantly thinking about what I CAN’T do and why. That can’t be good for me but I can’t stop it. A few more years of this and I imagine it will become a permanent subroutine in my brain, figuring out what I can’t do, what help I need, why I need help, how seriously I’d be harmed without help.. a huge portion of my brain forever ruminating on something that doesn’t help *me* at all. When I could be thinking about my writing or learning or having fun or…

So that’s where I’ve been and where I’m at. The DWP are basically inside my head and critiquing my every action. And it hurts.

And yet… until the system is fixed, I still advise disabled friends to consider putting themselves through it. Because the money maybe a modest sum but it’s LIFE-CHANGING. It means I don’t have to worry about affording a meal in a cafe or a takeaway when I can’t figure out all the steps to making my own lunch. It means I can get a taxi if I need to. It means I can pay bus fare for a friend to accompany me to a scary new place. It means I can afford food that isn’t beans. It helps but making it happen hurts. Possibly permanently. It’s a bind and I respect the choices people make about whether or not applying for PIP, ESA or both will be “worth it” for them.

Benefits Update

A full 16 months after I applied for ESA, I’ve finally got an answer. I’ve been put in the Support Group which basically means that I don’t have to work or seek work because I am too ill and disabled to be reasonably expected to try to find work that I can feasibly do and employers willing to make the many, many adjustments that would be required to make that work accessible to me. After literal years* of financial insecurity due to disability and ill health (including times when I had no money of my own) I finally have something resembling security – money to replace the employment I cannot be reasonably expected to seek or find until and unless I get much less ill (unlikely to happen as my physical illness is chronic and incurable and my mental illnesses are chronic and not responding all that well to treatment) or society gets MUCH, MUCH less disablist and much, much more inclusive and accessible (more likely to happen but still years away). I view it as somewhat akin to compensation – money to live off in recognition that between my body and the society I live in paid job opportunities for me will be close to non-existent but I still deserve to live a good life.

So, what now?
I’ve bought quite a few things lately that I’ve not been able to afford for a very long time – a mobile phone that actually works, a winter coat, new shoes, a Blue Badge and a Disabled Person’s Railcard. It feels odd both to have these things and to know that I can buy such things without worrying about whether I can also afford to pay my rent. This security is unfamiliar to me, I find myself still acutely aware of when each payment is due to come in and when my rent and direct debits are due to go out.

As I don’t need to look for or get a job, I’ll have a lot of free time. I’ll definitely be blogging and I’ve got some great ideas for posts lined up. I’m trying to get back into reading regularly and I want to write more fiction. In fact, I have the slightly ambitious aim of writing the first draft of a novel this year (I’ve written novels before but not since my teens). I’m also looking for very, very part-time volunteer activities in Manchester feel free to contact me if you’ve got an opening you think I could fill 🙂

In the medium term, I’m on a few NHS waiting lists to hopefully get some treatment for my my mental illnesses. I don’t expect to be “cured” but there’s a lot of scope for improvements in managing my illnesses and maybe even reducing my symptoms. A man can hope, right? Learning how to make a phone call without breaking from fear and panic, for example, would greatly improve my life and it’s a goal that is ambitious but (I hope) achievable.

Even longer term, I want to be a parent. I’m hoping to be on the adoption register as a potential adopter before I’m thirty. In order to get there, I’m going to need a few things I don’t have yet: a permanent home with at least one spare bedroom, more local friends than I have now, possibly a wheelchair and/or a service dog. I’m not hugely sure how to go about getting these things sorted but not having to worry too much about continuing to afford to eat and pay rent frees up a lot of time and energy for planning the little steps to the bigger goals. And I know what my big goal is: to be a good parent to at least one someone who didn’t get a great start in life.

So, that’s where I am. Right now I’m still pretty poor compared to most people but I don’t have to worry too much about it any more cos (for now at least) I know that I will have a regular income and that my rent will be paid. This means I can concentrate on other things. Which is something I’ve not been able to do for a long, long while.

*I’ve been trying to apply for DLA / PIP and ESA since 2011, the present year is 2015.

I write best when I’m hurting…

TW: this post discusses social care, “reablement” services, mental illness including self-harm and suicidal ideation and institutional neglect and abuse of disabled people, particularly of me. Stay safe and don’t force yourself to read it if it could harm you.

I sometimes feel I write best when I’m writing about what hurts me. This blog is full of post about my experiences of living with chronic disabling illness and of living in a world that reminds me over and over again that people like me – whether that’s disabled people, trans people, Jews, LGB people or unemployed people – are not wanted or welcome. I write about what hurts me.

I’m hurting right now and haven’t posted in almost a month. What’s happened?

I am being harmed. I am being abused. I am being… “re-abled” by social services. And they’ve decided i don’t qualify for on-going care. That means my care hours, as of tonight, will be cut to ZERO and any care I need I will have to organize and pay for myself – if I survive long enough to sort something out. (My friends and partners are not going to let me die so don’t worry too hard but I basically cannot be safely left alone for more than three DAYS without completely giving up on caring for and feeding myself. An otherwise identical person with no local friends would be dead or hospitalised within a month with malnutrition. I really wish I were exaggerating here).

For the majority of people who’ve never heard of it or had to go through it, “reablement” is an up-to-six-week long assessment period in which care is provided to a person and (in theory) they are given the equipment and support they need to look after themself. On paper, it looks like sort-of a good idea BUT in reality, huge funding cuts mean people aren’t being given as much equipment as they need, are fighting hard and waiting weeks to see that equipment and are being assessed as needing (as I do) about 5 to 6 hours of care a week THAT THE COUNCIL THEN REFUSES TO PROVIDE OR PAY FOR. And even if all the equipment I could benefit from were provided to me, even if I were given my five hours a week ongoing care to keep me alive… the process of reablement is still neglectful and abusive BY DESIGN.

The people sent to support me were deliberately and secretly instructed NOT to help me and to push me to do things by myself. My every morning wash and evening meal was secretly turned into a battle of wills between me, an exhausted mentally ill person in a lot of pain and a carer / support worker who was often meeting me for the first or second time. They pushed me further than I should safely be pushed and they pushed me every day. And I capitulated and forced my pain-filled exhausted limbs past my limits daily *because when I am scared or upset, my PTSD makes me extremely compliant*. I repeatedly tried to explain to both carers and my assessor that I am exhausted and in pain and vulnerable and that whilst I often physically *can* make myself a meal, I usually really, really *ought not to do*. I tried. My concerns were frequently ignored and now I have no care, not all of the equipment I was promised and a fight on my hands to stay in an abusive system in the hopes of getting less than a MP’s meal allowance a day spent on keeping me alive and healthy enough to do anything at all beyond surviving.

My depression and PTSD have been getting very bad lately and is it any wonder? I’ve been seen by carers and by my assessor in tears and self-harming. I’ve had to get friends to help me in the last few weeks because several times a day I think in all seriousness “I want to die just so all this stress and abuse will end”. Things are literally that bad but for the sake of a few quid the council would apparently prefer to let me try to look after myself alone.

And it all links back to the questions on the PIP and ESA forms that apeear in my letter box at irregular intervals and the number of different GPs who’ve happily signed my sick notes yet the DWP still want to get Atos or Capita to assess me in case all 6 GPs were wrong and the comments of the likes of Lord Freud who thinks people like me shouldn’t be paid minimum wage but also shouldn’t be able to live off benefits… it all comes down to having to fight and plead and abase myself daily to show that I deserve to live. It all comes down to narrating over and over and over again how my illnesses and disabilities affect me and how many doctors I’ve seen and getting professionals to write down exactly what I just said on pieces of paper that other professionals may or may not take into account… Will I be deemed worthy, fit for life, this time? And if so, for how long?

Ten things they don’t tell you about life with chronic physical and mental illnesses

I live with physical illnesses that cause chronic (ie long term) pain and fatigue. I also have several mental illnesses, including depression, anxiety and post-traumatic stress disorder. For all of my adult life, I’ve been regularly seeing doctors and counsellors and therapists and physios and nurses and social workers… all of them somewhat aware of my long lists of diagnoses and treatments. Here’s the important stuff that none of thought to tell me:

1. Becoming physically ill from a mental illness or mentally ill from a physical illness is really, really common.

PTSD can cause chronic pain. Chronic pain can cause or further exacerbate depression. Depression usually comes with anxiety. Chronic fatigue and pain are common symptoms of depression… Basically, human brains and bodies are complex systems and disruption in the functioning of one part will often have repercussions elsewhere. I am not, as I’d feared, somehow especially weak and unable to cope with one illness without developing more – I’m experiencing something fairly typical for people who live through certain kinds of trauma.

2. The brain is a part of the body and mental illness can be whole body illnesses. Likewise, whole body chronic illnesses like fibromyalgia and ME can and do affect the brain and so the mind

While medical professionals talk of me having several different illnesses (with overlapping symptoms) it often makes more sense to think of my mind and body as experiencing one great big illness that sometimes needs tackling at the level of its component parts and sometimes needs to be treated as a whole. Sometimes fatigue and pain and despair need to be tackled as just that, without worrying too much which part of my illness is causing them right now.

3. Being chronically ill, mentally or physically or both, makes it really, really difficult to tell when you’re acutely ill and need to see a doctor
When you wake up feeling like you have the flu every day it gets kinda hard to tell when you actually have got the flu. When nausea, weight gain and a tremor are all symptoms of your illnesses and possible side effects of your medication, it’s easy to ignore them when you should maybe get them checked out (I eventually did, got more pills for the nausea, some disapproving looks about the weight gain and a diagnosis of “benign essential tremor” for the shaking).

4. There is no surefire way to determine whether you’re actually really tired from fatigue or demotivated from depression

The only way to find out is to try to do something, if it hurts and you get post-exertion malaise, it was probably fatigue

5. Depression and anxiety can physically hurt; fibromyalgia and ME can make you cry with fear, pain, despair or anger

6. You cannot deal with only one illness at once, even if that’s how doctors, the dwp, your family and, well, everyone else, seems to think you should deal with it

PTSD flashbacks can steal lots of energy. So can strong emotions from depression and anxiety. Panic attacks can hurt and make your fibromyalgia flare up unexpectedly. Depression will use your new slower, sleepier pace of life against you to call you lazy or insist that other people are talking about it behind your back. Self-harm becomes easier than ever when your body feels pain at every touch and missing a dose of painkillers can guarantee agony. My body and mind are experiencing massive malfunction and problems in one area cause problems elsewhere. Most of my treatments are just fire-fighting as problems spring up everywhere.

7. People will try to tell you you’re just mentally ill or that you’re not mentally ill
Both assertions are unhelpful and reductive. You are ill, both your body and your mind are affected. It’s not your fault but you can’t treat just the body or just the mind and expect the problems to all go away.
8. The illness(es) you’re experiencing is not your fault
No one has ever said this to me and I’ve often wished they would. I didn’t do anything to deserve this – and if you’re ill too, you didn’t either.

9. “Incurable” doesn’t mean “It will always be exactly as bad as it is right now”

I really, really wish someone had explained this to me and I hope you remember it. There’s a huge, huge space between “how bad it is right now” and “how well people generally feel”. Incurable just means you will never get (back) to “well”. You can and will live in the space in-between. You can feel better, you’ll just never be well. I know that still sounds really difficult and scary but it’s more survivable than “I will feel this awful forever”. Mental illnesses like to extrapolate futures full of acute awfulness and I am telling you that’s not quite how it is.

10. A surprisingly large amount of pain and suffering is survivable and can become a “new normal”

I know this doesn’t sound like much of a positive but bear with me. As well as medicating my symptoms, which lessens my pain / fatigue / anxiety / panic / despair / involuntary thoughts but never stops them entirely, i have found that as the years go by, previously unendurable symptoms start to seem like normality: like how music and chatter in a shop can fade to background noise. With no real choice but to get used to pain, fatigue and involuntary thoughts, I have settled into accepting levels of all three that would previously have brought be to tears.

 

And one extra:

11. It IS really and truly possible to be happy *and* ill.

I am happy. I love myself, I love my friends and family and, yes, I love my life. I can’t always keep ahold of the knowledge that there is more to my life than pain and fear and fatigue and despair, but I often can and then I am happy. It is possible. I wish someone had told me that. It’s possible to be okay- and more – whilst living with multiple illness, physical and mental.

My Depression

Content warning: frank discussion of symptoms of depression, including involuntary thoughts and suicidal ideation.

My depression is worse than I’m used to it being and that’s eaten a few planned blog posts. Some of them are sitting half finished in drafts, others are still inside my head struggling to be born into words.

I know that if I don’t post here somewhat regularly, I’ll end up not posting at all – and i don’t want that. I love blogging and I love the way it helps me feel connected to so many other people. I want to keep doing this.

So:
Here’s a blog post looking my depression right in the face and describing it. I’ll tell you what it’s like and what it does and then I’ll press “Publish Post” and I will not just have a finished blog post, I’ll have stuck two metaphorical fingers up at the illness that wants me to stop blogging.

Depression for me is when my involuntary thoughts become more than just a murmur in the back of my head and become so loud that I can and do confuse them for my own thoughts. I have involuntary thoughts of suicide, of death, of harming myself and of destroying things – pretty much all the time. Most people get those from time to time and it doesn’t mean they actually want to do any of those things. When my depression gets bad, those thoughts seem to occupy so much of my mind that there doesn’t seem to be room left for normal thoughts about “What’s for dinner?” nevermind room for rebuttals like “Actually, I quite like myself and my life thanks” or “No, punching myself in the face will not help”.
And my depression is greedy – it feeds off things happening in my life like benefits claims and being far away from my siblings and makes them about how rubbish I am as a person. It feeds off my anxieties and insecurities. It plays tag with my eating disorder, PTSD and my chronic illness by giving me thoughts of things that trigger me, by exhausting me further, by telling me I am weak for being in so much pain. My depression hates me and it wants me to hate me too. It is the ultimate bully but unlike real bullies this one knows me almost as well as I do and goes home when I go home.
My depression knows all my secrets and wants me to be ashamed of them. My depression knows I can’t fight it on my own but tells me my friends are better off without me. My depression knows I miss my siblings but tells me nothing in my life could interest them because all i do all day is be ill and try to survive and how boring and pathetic is that? I pick up the phone and put it down again. I open and close the facebook chat box again and again.

If it were just the thoughts, maybe I could cope. For a long while, I did. But the thoughts bring up emotions and memories, cruel words that were spoken years ago to a very different, very scared little boy. Those emotions take their toll and they spill out of my eyes as tears and course through my limbs as pain. When I’m talking to people, those emotions blend with what they’re saying to me and my depression suggests things for me to say. It’s fond of “Fuck off!” and “Leave me alone!” and “You don’t love me” and I take a deep breath and say what I want to say instead. Then my depression tells me I’m awful for even thinking of saying such hurtful things to my friends. How ungrateful. How selfish. Or tells me I’m manipulative for not saying “what I really think”. I think my depression is the one who’s being manipulative here.

I struggle. Because the problems my depression is feeding off are real: I am ill, I am distant from my siblings, I am applying for disability benefits, I am signed off my course… But the solutions it offers me – run away, hide, die, shout and scream, give up, cry until I sleep, eat, stop eating, beat myself up – those won’t help me.

I’m getting the help and support I need. I sought advice about all the problems and I’m going to fix them, one by one. I will live through this version of hell my head has made for me, just like I lived through the ones I’ve had before. Gender dysphoria couldn’t beat me, PTSD hasn’t beat me, panic attacks didn’t beat me. Depression isn’t going to either.

More than that, I’m going to be amazing. Because I don’t hate myself, not always, not really. Because I’m a wonderful person and nothing could ever make me deserve to be mentally ill but here I am and I will make the best of it.

Watch out world, because depressed or not I am here and I’m not fucking going anywhere. I’m staying and one way or another I’m going to make the world a better place. Just you watch.

And i know my old friend depression will come along for the ride but that’s never going to stop me.