So I filled in an ESA50 last week and was reminded afresh what a terrible form it is.

Yes, we all know it’s terrible, a terrible form for a terrible benefit in a terrible system. It’s not designed to be helpful and it’s not designed to be fair. But I can’t help thinking: imagine if this form were made so that the questions actually focused on what you have to do in order to hold down a job?

I’m at risk of not passing Work Capability Assessment because I’m not so desperately ill as I was and the bar is very high, so I might be seen as fit for work simply by virtue of not currently being under the wheels of a train. I have a fluctuating condition, so I have to choose the “it varies” option most of the time, and my enduring memory my last WCA is that a verbal “it depends” irritates assessors as it isn’t tidy.

Unfortunately when it comes to deciding when to go back to work it’s just the DWP and me, and they don’t really know what to do with self-employed people. I’m not a “jobseeker”, but I don’t have an employer. I don’t need support to find work, but I don’t have a manager or occupational health department to help me. When I can’t work, I claim. When I can work, I stop claiming. This isn’t tidy either, and seems an unending source of puzzlement to call handlers and Jobcentre staff.

So I have to be my own HR advisor and review the evidence. Am I work ready? Is a return practical? I’m going to take the radical approach of making my questions directly related to work!

Can I get up in time for work?

Probably not. Sudden antipsychotic sedation means I forget to set alarms. Sleep-wise, lurasidone is the gift that keeps on giving, because once the sedation wears off a couple of hours later, the relentless insomnia kicks in. Despite zonking out at 10pm I only get into good sleep around 7am, so I don’t trust myself to hear an alarm anyway. Getting to medical appointments for 11am is doable, but 10am’s a massive struggle. To be at a work thing for 8.30am would mean getting up 6.30am, and that simply doesn’t feel possible at the moment.

Can I get to work?

There’s a question on the ESA50 section on going out which is somewhat sensible as far as it goes, since it asks about known and unknown destinations, travelling alone or accompanied. But it doesn’t ask the central question around fitness to work: can someone actually get there?

For me, it depends (sorry). I can’t work from home all the time because I have external commitments like meetings, conferences, training, research interviews, etc. Travelling within a short distance of home feels OK, but almost all my work is central London or outside the capital.

I haven’t taken public transport in rush hour for months so have no idea how I’d cope with the crush. Then there’s the issue of prior suicidal behaviour. Buses are fine but I’ve been avoiding the tube since I was last hospitalised in July. Standing on the platform while fast trains whizz by is distressing and I can’t use national rail at all.

I have no real idea how long it’s been since I was in central London. Four months? Five? It was an ordeal then – too many people, noise, mental stimulation – and lately I have become more reclusive. Tube travel into Zone 1 is the big thing I would have to crack before being able to work, and until I can manage national rail I won’t be able to go to events elsewhere, which really limits opportunities.

Can I attend work promptly and reliably?

I genuinely have dreams where I’m offered an interesting job but remember that I can’t guarantee to be at my desk. It wouldn’t matter how part time it was or whether I picked my own days, I just can’t say that I will be there when I should be. Hell, I don’t even sign up for the choir tea rota, conscious of the possibility that I could be suddenly unable to follow through (true fact).

Just because I don’t have a workplace doesn’t mean I don’t have to be reliable. Freelancers still need to turn up to external events as necessary. Even when at home I still need to be ready and present for calls, teleconferences, Skype meetings, important emails. No show, no payment.

Can I cope with change?

This is the remit of Q14 of the ESA50, but it only deals with “small changes in your daily routine” and many work changes are far from small. Even cancelled or rescheduled meetings throw me, and the projects I work with can be quite fluid and hit an impasse or never pass proposal stage. I struggle hugely with changes in project leader. Even if I could take the tube, route changes because of delays would be scary for me. Maybe some days I could cope with that, but on others I’d be a wreck, because it… depends. I don’t have enough resilience yet.

Can I concentrate at work?

It’s pretty easy to reel off a list of work tasks that are really hard when you can’t concentrate. I’m struggling with dates and times. I’d have to be able to juggle multiple projects again, sustain focus throughout meetings, remember the names of training participants (and judging by the length of this blog, I would also have trouble meeting word limits).

Mental health conditions are rife with concentration-suckers, from the fog of a sedated or depressed brain, to the flighty mind of hypomania or the intrusive thoughts of anxiety. Even when my moods are quite steady exhaustion from persistent insomnia and anxiety about getting things wrong are leading to an absolutely marvellous Catch-22 whereby I get things wrong and feel tired and anxious. Just this week I managed to lose a spreadsheet vital for my tax return, yay me.

Can I behave in an “appropriate” way at work?

Q17 on social situations is useful to a degree. I have issues around appropriate behaviour, most obviously when hypomanic, but psychotic stuff is a problem too and I can’t engage when I am very depressed. Guess what guys, it depends.

But there’s much more to being seen as “appropriate” at work, a lot of which disadvantages people with mental health issues or ASDs. If I’m out of home (or on a video call) I need to scrub up, put on my unofficial uniform, brush my hair, put on a bit of makeup. I may well need to be social over lunch or at a team meal. I’m often in meetings where we do the “go round the room and share” thing. I might be able to do those things today. Next week, I might not.

Can I make sure I am paid?

Sorry, DWP, but most of us aren’t going to want to work just to get ourselves of your books. We work to get paid and the landscape of work these days involves myriad ways for people to not get what they are due.

Me, I have to bid. This requires confidence, if not downright chutzpah. My current view of my skills and talents is low, so I’m not swimming in chutzpah. Then I have to have the organisational skills and memory to invoice, and know exactly what I am invoicing for and for how much. Since I just lost that spreadsheet I’m not particularly secure on this. If payment doesn’t show, I need to have the assertiveness and communication skills to chase, something I hate even when well.

So am I ready to go back to work?

No… but getting there. I will get back in that saddle, but it’s going to require more time and more patience with myself. At least writing this post has made me more aware of the remaining – and very real – barriers that need to be tackled in order for me to get up, get ready, get to work, do the job and get paid for it.

I’m making a very tentative plan involving looking up previous work contacts, seeing if there could be any projects which are more home-based, taking baby steps on the travel front. As far as sleep goes I have to just hang on in there and hope I adjust, because neither my consultant nor I want to throw more drugs into the mix.

What I really need is a way to gently but steadily push forward with my own phased return, but I have the sinking feeling that I am entering a twilight zone whereby my own assessment based on my knowledge of my condition, treatment and job is that I am not well enough to launch back into employment and earn my own money, but the DWP’s uninformed assessment is that I am not ill enough to deserve theirs.

There’s a lot of talk right now about possible reforms to ESA and the offer of “tailored support”. But until the DWP applies real-world questions in assessing work capability sick and disabled people will be told every day that they are totally fit to do jobs that simply can’t exist, or that because they can do actual jobs one day a month they can do them every day. You’re either in, or you’re out. There is no “it depends”.