“At heart, I have always been a coper, I’ve mostly been able to walk around with my wounds safely hidden, and I’ve always stored up my deep depressive episodes for the weeks off when there was time to have an abbreviated version of a complete breakdown. But in the end, I’d be able to get up and on with it, could always do what little must be done to scratch by.” ~ Elizabeth Wurtzel
I started this page in part because I couldn’t find any writing about the mental health experiences of people in a similar position to me.
I found conversations about mental illness that left people too ill to work and I found conversations about continuing to work through ‘milder’ conditions; but nothing about people like me who are able to work though intermittently.
It could be that I just wasn’t looking in the right places, I was very new to this online mental health community and I have found plenty of lovely people in the same particular model of boat as me since, but at the time I felt very alone.
Fast forward four years and the government is wanting to install job coaches in GP surgeries because they apparently believe that getting into work is best for the health even of those who are dying.
This is being met with condemnation by those who quite reasonably point out that not everybody is able to work; some people unfortunately suffer from long term conditions, which can be mental or physical, which just make it impractical for them to work. And that besides which a health care centre just isn’t an appropriate place for the DWP to base itself.
What I’ve still not seen much of, however, is more nuanced discussion around the middle ground. There are some of us for whom being in work at certain points can be a very helpful thing but at others can be as equally harmful.
For this group of people the assumption that adults should be in or seeking work as a default is unhelpful for different reasons that would need to be addressed in different ways.
People who can’t work should be afforded a decent standard of living by the welfare system. People with fluctuating conditions need more flexible employment options and services which offer advice that is better tailored to their circumstances.
By flexible I don’t just mean in terms of full, part, and flexi time. I mean that we need to rethink the concept of the working day and to normalise the idea of taking time out for health reasons without having to worry about gaps in your CV.
When I first started working it was in a job that required long hours and lots of travelling, on top of which I had a very active sporting and social life. I didn’t get anywhere near enough sleep and would sometimes have to block out whole weekends to do nothing but catch up on rest, but that was fine. I was doing all the things I wanted with my life, it was my choice.
Unfortunately, neither my physical nor my mental health have ever been great enough that I should have reasonably expected to be able to keep that up throughout an entire career.
And so I’ve had to rethink, rebalance, and adjust my expectations of what my work and my life should look like. I’ve had to look for more stable, reasonable working patterns to try to stay in work while also trying to manage a basket full of chronic health conditions.
And sometimes that was absolutely the right thing to do.
The structure, the company, the activity, the reason to get out of bed have helped me at least to not get worse when I’ve been going through an iffy patch. When I don’t have something stable in my life, something that I ‘have’ to do my mental health tends to slip.
At those times I’ve seen the prospect of having to give up work as just another in the long list of things that have been lost to these horrible illness which make me feel as though my life is out of my control.
However, at other times fighting to keep up with, to stay in work has been absolutely, totally, categorically the wrong thing to do.
I didn’t have the physical, mental, or emotional energy to work, try to structure being well enough to someone else’s timetable, and working on healing and recovering. Something had to give, and that something needed to be working since that’s the only thing that could realistically be put off for later.
But it took me years to recognise this because I thought I ‘had’ to have a job to have a ‘normal’ healthy life.
And my mental health teams seemed to see people in two categories: not able to work period or needing to work because it’s best for you. There seemed to be very little recognition of any sort of middle ground. That sometimes work is a good aim but for further down the line.
Or that working might be a good idea for you but that you may be best off reconsidering your idea of what ‘work’ has to look life, to find a healthier model.
I tried and failed at going back to work three times. And each time I did both the trying and the failed contributed to worsening my health over the long term.
The last time on the other hand worked really well, and really helped me healthwise – although improvements didn’t become noticeable until around eight months in.
That was because I’d finally worked out, without any help from any medical folk or job advisers, that I needed to adjust what I was looking for to make it work.
A job that was predictable and stress free enough for me to have enough energy and brain space to work at both the job and the getting better. I ended up in a completely different environment to anywhere I’d worked before, in a different industry.
If someone had only given me this as a piece of advise about six years ago I might have spent less time being too sick to have a choice over whether I could work or not.
I was made redundant from that last job before Christmas. I want to work again but I’m not willing to take a gamble on trying to find a place where my needs and those of the job and employer mesh.
So, I’ve worked out what kind of work, hours, and flexibility I need to be able to do both my best work and look after my health as well as I can. And I’m designing a way to work for myself that will incorporate both of those things.
I realise that I’m incredibly lucky to have the space and the circumstances to enable me to do this. I have a supportive partner and the DWP aren’t going to come breathing down my neck. I realise that this isn’t the case for everyone.
But if I had to work it out myself as nobody in healthcare seemed to have figured it out before me, there’s no way I believe job coaches or any of this government’s policies are going to help anyone to get there.
What might help is a far more person centred welfare system combined with workplace absence policies which treat illness as a health and welfare rather than a disciplinary issue. This would make life a lot easier for people with chronic health problems and patchy CVs like mine to move into and out of the workplace based on the demands of their health rather their bank balance.
We also need recognition and that work is not the only way to contribute to society and that if people aren’t well enough to work full time, manage their health, and participate in other ways – through family life or community activities – then they aren’t well enough to work full time.
Not all work is inherently valuable. It benefited nobody in any way, shape, or form to have me work in a PC World technical support call centre as a teenager who knew nothing barely anything more about computers than how to turn them on.
I’ve added far more to the greater good by volunteering, getting involved in community things, looking after people around me, and even writing this blog than I have in some of the jobs I’ve ever done.
And during some of my periods of ill health I haven’t really benefited anything at all. Which is also fine, not everybody needs to contribute all of the time.
We need a system that allows people with chronic health problems to earn enough to feed themselves while at the same time having enough energy in reserve to actively participate in the society that they’re a part of as well.
Healthcare isn’t just about medicine, treatment, and services. People need to be given the space and financial security they need to be able to recover properly.