Personal Experiences


Something I hear a lot from people who complain about others being on benefits is that they have no problem with people who truly can’t work getting them, it’s all those other people they’re pissed off about.

The trouble is, they imagine they are a good judge of who really can’t work.

What I’d like to say to these people is this. Every time you attack benefits, every time you call for them to be cut, every time you sit in the pub and have a rant about how benefits claimants are stealing from you, you perpetuate the myth that lots of people on incapacity benefit could work if they really wanted to and you’re increasing the stigma that makes it even harder for us to live our lives.

I’ve had people I know do this to my face. “Oh, but I don’t mean you“, they say when I speak up. Well, that’s the nice ones, I know very well that some of them do mean me because they have no idea about mental illness, no idea about depression, and generally no idea about other people’s lives. But even if they don’t mean me, they still mean some other person they don’t know, who they look at and think doesn’t look disabled so must be a cheat.

A friend with schizophrenia does voluntary work in a charity shop, and every week another volunteer, a retired man, says to him “haven’t you found a job yet?”, swiftly turning something that should be helping boost his sense of self into something that destroys it. Robin wrote eloquently about how the stigma of being on benefits prevents recovery from depression, and I see and experience that all the time – even from mental health workers.

There are many barriers to employment for people on benefits, and increasing people’s misery and lack of self-esteem by haranguing them for not having a job does nothing to reduce any of them. People on incapacity have been assessed by doctors and continue to be assessed (how often varies according to the severity of the disability – for someone with suicidal depression for instance, it’s about once every three years).

Politicians on both sides, pompous newspaper columnists working for tax-avoiding companies, bloggers, tweeters, and guys down the pub, all harp on about cutting benefits with little to say about how we can really get people out of poverty, apparently blind to the fact that cuts in benefits will only make poverty even worse. They might occasionally say “but I don’t mean you“, but in reality it’s exactly people like me who schemes to cut benefits end up hurting.

Hello, I’m Violet, I’m on income support for incapacity for long term depression, and I’d like to invite you to spend a day being me.

I wake up. My brain instantly regards this as a bad move, and does its best to put it off for as long as possible, hibernation being an instinctive self-defense mechanism against depression. Unfortunately it’s counterproductive so eventually I manage to make myself get up.

Coffee. My eyes glaze over to avoid the horror of the piles of dishes waiting to be washed, and I clean a mug as fast as possible before the panic sets in. Coffee in hand I escape to the computer and check my email. I spend some time connecting with friends and the world, and then I make a mental list of the things I absolutely have to do today because they cannot be avoided any longer, like buying some food for the next few days.

Town is a 20 minute walk away. Exercise is good, when I am up to it, but 40 minutes of walking (half with heavy shopping bags) and the time spent dealing with other people is not good for my thought processes. Sometimes I’ve been able to drive into town, but it’s almost impossible to afford to keep a car running on nothing but income support.

I prefer to go to small shops, and exchange some friendly words with local shopkeepers who know my face, but sometimes I can’t avoid the supermarket, and the crush of “normal” people inevitably sends the negative feelings spiraling out of control. I feel different, isolated, cut off, tearful, I have to concentrate on my breathing to keep down the panic.

I escape home. If I’ve walked, by now I’m exhausted for the day. Even if I’ve driven the emotional expenditure often calls for a crash to recover for the afternoon. I unplug the phone, because it’s awful jangling noise makes me want to bury myself in a hole for the next ten years, and I can’t cope with any more people right now. I remember I’ve got a pile of unopened bills to deal with. I panic about the cost of heating over the winter. I realize I still have to face the dishes, oh, and I need to put some laundry on if I’m going to have any clean underwear. I want to crawl back in bed and pull the covers over my head but if I fall asleep now I’ll have dreadful nightmares due to side effects of my medication. Half the time I fall asleep anyway. The other half, I calm myself by telling myself not to worry, if it ever gets too bad it’s never too late for suicide. (Out of proportion? Yes, that’s what depression does to you.)

Evening creeps over the world. I have probably only eaten a couple of pieces of toast, so it’s time to put some food together, which involves tackling some washing up, and its attendant feelings of uselessness, worthlessness, and self-hatred. I am pathetic. Any normal person does not get so overwhelmed by simple housework that they live on toast for a week. I’m so pathetic I should just stab myself in the throat and get it all over with. Fuck, it’s not as if the powers that be want me to stay alive. Just die already, you stupid whining fool. Save us all the effort of listening to your pointless, self-pitying blabber.

Then I might cheer myself up by researching suicide methods on the internet, and working out which is the most accessible and least painful. I’ll also connect with friends and support forums, and maybe I’ll feel a bit better, maybe I won’t. When I’m seriously suicidal I become so weak I can barely move, my limbs feel full of lead, I’m incapable of taking any action on my suicidal thoughts. That is undoubtably why I’m still alive.

Some days are better than others. Maybe I made a nice meal full of fresh vegetables and delicious spices earlier. Maybe I remembered to plug the phone back in and had a nice chat with a friend. Perhaps I watched a movie with my boyfriend. When I’m in an “up” phase I do some voluntary work, and spend time supporting other people on depression forums.

On the other hand, some days are worse. The oven breaks down and how am I possibly going to afford to replace it? I get a letter from the benefits people and have to spend all day dwelling on my miserable state and writing it all down and filling in all the same boxes as last year and feel like I don’t fit into a box and people are chopping my limbs off in order to force me in to one. Perhaps I’ve had such a shit week I can’t get out of bed and get up at 5 pm and half watch random crap on BBC iPlayer and fantasize about cutting myself to make the hours go by.

Inevitably the day ends with me going to bed and lying awake tossing and turning for a couple of hours waiting for my brain to just shut the fuck up with all its bullshit already and let me sink into the world of my dreams for the best hours of my life, even when the meds mean they’re mostly nightmares.

Welcome to a day in my life. I hope you enjoyed your stay.

As I said in the barriers to employment post, being unable to work isn’t just about whether you’re able to perform certain tasks. One area I didn’t really get in to, though, was the extent to which people’s attitudes towards people on benefits can make life even harder for us.

I hope this reader contribution from Robin, in South East England, will make that point for me.

Robin writes:

I suffer from depression after a series of traumatic and distressing events and losses. I would like to be able to spend time grieving, dealing with the past. I am still on a waiting list to find psychotherapy after ten years of trying to get help – the psychiatrist I was sent to initially said she could not help as I do not have a mental illness, but a natural reaction to horrific events, so I have been bouncing about different waiting lists for therapy since, in the meantime on antidepressants and regular GP visits. For the first two years I could not go out alone: I would cry, shake and sometimes breakdown screaming in pain and terror, and would need to be helped home again. I could not do the shopping: I could no longer count the money in my hand, or remember what I was buying. People would approach me in the street to tell me off for looking unhappy: “what could a young girl like you possibly have to look so miserable about? I’ll show you what’s miserable!”

The reaction and comments from other people have been by far the biggest barrier to recovery. Apart from frightening remarks from random strangers in the street, I have been upset by people’s attitudes, ranging from teasing through taunting to threatening. I don’t know if it is because people who have not suffered in life are scared when they see someone else’s suffering – perhaps it is a defensive reaction – or whether it is human nature to “kick people when they’re down;” I think a bit of both. But what has been very clear is that resentment plays a huge part: resentment that I do not have to work because I receive income support.

My partner, who was also unable to work as we were nursing his sick father, had a small sum of money inherited from his grandmother which saw him through a few years. He did not receive any of the taunts or threats I did. Because he did not have rent to pay, as he was able to stay at someone’s house, he was able to work one day a week, so was able to avoid being labelled “benefit scum.” I was not able to try working one day a week even once I became accustomed to venturing out alone, as my benefits would have been stopped and my rent unpaid. I lived in terror of having my small amount of money taken away and having to sleep on the streets. I had nowhere to go if this happened, and the stress and worry was a constant cause of sleepless nights as well as preventing me from being able to gain work experience of any kind. The benefits system penalises people who would like to gain work experience or find out what work they could manage, as an attempt to work or part time work is seen as a reason to take away benefits.

Most of my family are not supportive. I had cousins come to stay with me who, every day on returning from work, would repeat the same “joke” about how they had worked to pay for my benefits with their taxes. To these young, carefree people, who had never lifted a finger for anyone in their lives, never had to work to survive (yes they had jobs in hotel bars, which they saw as a bit of fun in between travelling and partying, but they had wealthy parents who they knew would help them out if anything went wrong and rooms back home to go to if needed), saw my life spent dealing with abuse, bereavements, nursing someone close to me until he died, all the while struggling to complete courses to get qualifications, as something at best to joke about, at worst as an example as a leech scrounging off society. I was told by an aunt who did not even want to listen to my experiences that everybody had experienced the same, but was stronger than I was (it later transpired she meant everyone knew someone who had died – not “the same” as horrific, sudden loss of the person closest to you, or the loss of someone you have nursed for four years). I was told by my sister-in-law that I was “faking” because she had seen people who had had bereavements and they were happy. I was told by another cousin that it was actually very funny to imagine me being hit as a child and that I probably deserved it, and by another that my whole family despised me because I was so pathetic and did not work. None of these comments, needless to say, helped me on a path to recovery. In fact after each I was often left alone, swaying to and fro, screaming and trying to cut my wrists, too scared to go outside for weeks, scared of the world of people who despised me, who found my suffering amusing. I began to think they must be right: that I deserved everything I got, that I was worthless, someone it was amusing to hurt, that my feelings didn’t count and that my experiences were simply commonplace and I was a “pathetic” wreck.

I have since visited psychotherapists who have told me that this is not so, that I had a bad childhood and suffered unusually traumatic bereavements. But it is hard to shake off the feelings of worthlessness and even as I write this I am anxious that readers will be laughing scornfully and telling me to pull myself together.

Every time someone tells someone on sickness benefits that they are scrounging, or that they are not contributing to society, their self-confidence – already low from the humiliation of the benefits system and the misery of poverty as well as their experiences and suffering from their actual condition that got them there in the first place – slips further beyond the point of retrieval, until they are in danger of being frightened to attempt to partake in the world any more, yet alone go out and get a job.