How does a UK bipolar person escape the disability benefits trap?
July 25, 2017 12:06 AM   Subscribe

I was assessed last November as being in the ESA Support Group due to Type 1 Bipolar Disorder, and my DLA is low rate mobility/ middle rate care, and I get housing benefit. So I have enough to live on (no partner or kids to support) and can afford movies/ concerts/ books etc. I have officially been assessed as severely disabled and am not expected to be doing any back to work activities, plus I get that extra severe disability payment. Yet I get little joy from long empty days and feel my life lacks meaning without voluntary or paid work. I could do some voluntary work now but don't want to start with a place without an end goal of realistic employment somewhere else, I would rather have a plan for paid employment and work backwards to think of what voluntary work might train me for that. However I am very frightened that in attempting to better myself I might make myself far worse either sending my health back to a bad place due to being triggered, or falling foul of the benefits system and being worse off financially.

My main two fears actually don’t relate to the quite probable situation where I might recover enough to seek work and I send out application after application and get nowhere. I think I could cope with that providing each week included some fun activities to balance out the rejections (or more likely these days, deafening silences). My number one fear is getting a job, being in over my head and unable to cope due to disability, and then being unable to go from there back to ESA if I feel too unwell to continue. If I was assessed as being fit for work and having left voluntarily I wouldn’t get any benefits for a long time. If I went through the due process to leave on medical grounds I would still be submitting a new claim for ESA which would mean a substantially lower income until my claim was processed, and likely after that too. If I was declared fit for work and had to claim JSA, it’s only £73 a week so substantially less than disability benefits – it would feel a pretty miserable existence and a punishment for having tried to better myself. Not to mention the constant threat of sanctions taking away even that JSA money if my job search wasn’t satisfying the people at the job centre or I missed a signing on appointment. This is the situation which a Guardian article described as “hunkering down” – where people try to cope on the amount of disability benefits they get for fear of seeking work and ending up in an even worse situation.

My second major fear is getting into a job that makes me miserable, such as a toxic working environment. In my past, in my first job, my self-esteem took a hammering as a result of low-level bullying by my boss to the point where I simply walked out after three years with no job to go to and unable to ask for a reference. I was constantly on edge while at work for those three years, and my only happiness came in going out on Saturday nights with three friends. During the week I was very tired in the evenings and I remember in particular a sinking feeling in my stomach on Sunday evenings knowing I would have to face another week. I had so many anxious thoughts at work my performance was poor, my confidence was very low which was reflected in the way I communicated which caused others to lose respect for me, and I thought so little of myself that I couldn’t muster the energy or confidence to search for another job. Although I am better off now than then because I have a diagnosis and better knowledge about bipolar disorder and am maybe a bit more articulate to communicate if I was struggling, I worry about being in a work situation where I am one of the “walking wounded” in life – able to hold down a job at a level of not getting fired, but not having much energy for anything else, and feeling emotionally numb and too stuck to improve my situation. I am well aware of the saying “most men lead lives of quiet desperation” and that’s a situation I am afraid of.

There’s a lot I don’t like about my current situation, in particular a sense of shame when I meet new people and they ask what I do, and a feeling of guilt that I am not doing things to help myself towards work like studying for an ECDL computer course I already paid for. (Even though I am assessed as being in the ESA Support Group which means I am not expected to be doing any back to work activities so am officially not expected to be doing anything). I feel I am a long way away from paid work while the older I get and the longer since I was in paid employment (I last worked in 2005 but being an unpaid caregiver for many years limited my options) the more difficult it will be to work again.

It has a feeling of someone renting in an expensive area and trying to save money up for a house deposit, but they are saving £300 a month and house prices are going up £1000 a month. I haven’t really had the opportunity to address my two main fears with anyone so I have buried my head in the sand about them and I’m not sure if there are easy answers without risks or downsides – they are not simply irrational ones which need comfort and reassurance, but ones with a basis in fact which need planning as risks to be mitigated, as well as talking through and dealing with the emotions.

That's a lot of text! Has anyone been in this trap and come through the other side to be in sustainable paid employment that they felt was a better life than the one they had before? I suspect part of the answer is a prolonged period of working without pay which I would be happy to do if it gave me a career or emotional benefit. How did you do it? Or if you haven't done it personally but have thoughts/ tips I'd still be very happy to hear them.

Thanks in advance for any advice.
posted by anonymous to Work & Money (5 answers total) 6 users marked this as a favorite
I'm not on ESA but am on carers allowance and have 2 children on DLA. I have some small experience of bipolar 1 through friends with that diagnosis but pinch of salt because there aren't thoughts from direct experience.

Of your two worries you can't really tackle one because it's about a situation you're not in - a toxic work environment with your health destroyed. I understand why the fear exists but it's not something that can "just happen" because you would have to find the job, get the job, do your probationary period ALL without having any inkling that it was going to be too much/not good/toxic and with your previous experience that's not likely to happen. You will spot it a mile off.

The other you can tackle. You can commit to some voluntary work in an industry that interests you or with a company you like and set your own end goal in order to evaluate how you feel about that industry/company. You don't need to get a paid role at the end of it for it to be worthwhile. If you finish out 3 or 6 months of unpaid work thinking "wow they really have the worst working environment!" then it will have been worthwhile.

My children have autism rather than bipolar. But I think the main problem for anyone in your situation is that there are several fairly linear set out "paths to employment" that people tend to follow and that society expects you to follow. And if you have significant deficits in some capabilities and significant gifts in others that linear path just doesn't fit. Like there are people I know who can do high level complicated maths in their head but they couldn't write their name on an application form. Which is wild because they could literally work out the share of an annual profit attributable to each employee in Starbucks in their heads in a few minutes, but aren't good enough at literacy to get a job there clearing tables for minimum wage.

So basically I think you are in the trap of thinking in straight lines from where you are to where you could be when a more tangential approach might be more fruitful for you. You have time and space and a little money so you have the chance to explore. What is something you're really interested in? Can you get voluntary work in that field? Let the next steps worry about themselves. I know someone who is a photo journalist because they volunteered to help a friend who was a wedding photographer and a friend of the photographer saw her test shots and loved them so much he asked her to come and chat about a travel piece he was writing. Big stuff grows from teeny seeds. Go and scatter some and see what happens.
posted by intergalacticvelvet at 3:37 AM on July 25, 2017

And also you may benefit from some therapy to help you realise that you didn't ask for your neurology and you are a person as worthwhile and legitimate as anyone else. I'm so proud of our welfare state that will help my children live in a world that would be unbearable for them without that help, but I also know that they can and will contribute to the world in their own ways. To have been put in the support group you must have a very significant illness. You didn't ask for that. You are no slacker! Not everyone understands the work of "just living" with a chronic illness, especially an invisible one. But I do And it is no little thing. And you are here living and looking for a way to contribute and live a fruitful life. Kudos.
posted by intergalacticvelvet at 3:44 AM on July 25, 2017 [2 favorites]

I get little joy from long empty days and feel my life lacks meaning without voluntary or paid work.

The most important thing here is to feel that you have a life with meaning, not that you have a life's meaning dependent on paid employment. I would encourage you to look to other humans to remind yourself that the world's machinations are fueled by people in unpaid work.

I mean, I have a perfectly nice job I mostly enjoy, but the most meaningful work I do is volunteering for my local dog rescue. I help raise thousands of euros both by organising events or just turning up to shake a donation box, and I have fostered and homed my fair share of dogs over the past 5 years, although we have valuable volunteers who don't do any direct dog work at all. We have an incredible volunteer who just knits items for us to sell, for example.

My point is that when I die, nobody is going to stand up there and say "she made great websites." I hope they will stand up and talk about this other, unpaid work I do.

I could do some voluntary work now

You should. You really should. You should volunteer for something that will get you out of the house, interacting with other humans, and putting some structure on your day. Those three things are crucial for your mental health. Outside of meds compliance, they are probably the three best things you can independently do for yourself.

but don't want to start with a place without an end goal of realistic employment somewhere else,

This sounds noble but is in fact obstructionist thinking. This constructed desire for a Grand Life Plan is stopping you from taking the first step towards improving your self-worth and quality of life today. Please look for organisations in your community that will help you meet the short-term goals of getting out of the house, interacting with other humans, and providing some structure. Something where you can start out one or two days a week for a few hours a day would be allow you to try without a huge commitment. At my old work, we had a volunteer who came in every day at lunch just to answer the phones so that people could take lunch. That person was a goddess.

If getting your EDLC interests you and will make you feel a sense of accomplishment, do it for that reason. Lower the stress and don't make it some huge important foundation for finding a job and The Rest of Your Life. It isn't.

I would rather have a plan for paid employment and work backwards to think of what voluntary work might train me for that.

Some people with BPD are able to do this and some people never are. That is the reality of this illness. My friend Jane is very young and is on disability due to her BPD and will absolutely never be in paid employment again because the stress triggers a cascade of ill effects. She leads a completely full and busy life and has the love and regard of a huge circle of friends.

I would encourage you to focus on a goal that is not work related, but rather quality of life related, in the short term. These short term goals are going to be a good, solid and worthwhile thing to have in your life regardless of which way the future plays out. (See the previous point about obstructionist thinking.)

On another note, please be mindful of how incredibly fortunate you are to have your benefits package. (I don't mean that you should be grateful, at all, because you shouldn't; I mean that you are literally lucky to not get completely screwed by the current regime.) You can volunteer all you want, build a rich life, and keep this package. That is no small thing. Don't undervalue it and don't be quick to run away from it.

I haven’t really had the opportunity to address my two main fears with anyone

Your specific fears and anxieties are 100% normal, just so you know, and not at all unique to you. Have you looked for a local BPD support group? Just talking to and hearing from others is really useful. Your Community Mental Health Team may well run one. It's worth asking.
posted by DarlingBri at 3:56 AM on July 25, 2017 [7 favorites]

I just wanted to reinforce an element of what DarlingBri suggests. It's easy to think of volunteering as being "less" than work. Less money, sure, but we falsely therefore think it's also less real, less prestigious, less interesting, less challenging, less of a career path.

I know people who, between them, run an entirely voluntary international aid charity in their spare time, taking trucks full of donated clothes, medical supplies etc., to refugee camps in the middle east. If it was run by paid staff, some of the roles involved would be serious, demanding jobs, but it just so happens to be headed up by an extraordinary 80-year-old with a team of a couple of dozen other volunteers, some retired, some not, all giving whatever they're able in terms of time and effort. YMMV depending on where you live and the opportunities available, but there is no reason that embarking on a role that happens to be unpaid should not be as challenging as a paid career.

And in terms of the very real question of self-esteem and prestige, people are always impressed when you tell them you volunteer. They're so busy being in awe of you that they don't even hear you saying "Actually, it's because I'm on ESA and can't work" because they're too busy saying "Oh God, I always mean to volunteer, you're so good, that sounds amazing, well done." (As DarlingBri has proved with her "goddess" comment, I see on rereading more carefully!)
posted by penguin pie at 1:01 PM on July 25, 2017 [1 favorite]

Look at starting your own job. Some hobby or craft at the beginning, which you then ramp up gradually - as health allows - to a more serious business.

This allows you to 'test the waters' without falling foul of your country's disability requirements.
posted by Kwadeng at 10:22 PM on July 25, 2017

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