I’m afraid of quite a few things. Here’s some of them (in no particular order):
- Animals with no legs
- Animals with too many legs
- Drowning
- Love Island
- Bathrooms with carpets
- Becoming seriously unwell
- Becoming unemployed
Today a link to a Guardian article circulated amongst the Groundswell WhatsApp groups. It opens with:
“People deemed unable to work – including those with a history of self-harm or at risk of killing themselves – could have their benefits reduced and face penalties under new government plans.
Under the proposals, which aim to make it harder for people who are long-term sick to claim benefits, ministers are hoping to reduce the number of people deemed unable to work at all as part of wider plans announced in the spring “back to work” budget.”
When I was unemployed following my breakdown several years ago, I was fortunate – although I’m unsure fortunate is the right word – to be placed on a high rate of ESA. This was after the usual hideous application process and assessment. The money wasn’t much but it was enough alongside housing benefit and not having to pay council tax.
ESA, alongside other types of benefits including Job Seekers Allowance, became Universal Credit (UC) in 2013 and people on ESA etc were slowly transferred across to UC. My original application and assessment were in 2012-2013 and I was never transferred over while I was receiving ESA.
On ESA I was allowed to volunteer freely and was not monitored by anyone at a Job Centre. Every 18-24 months I’d receive another bumper form to complete. Strangely, the only pressure to return to work I received was from my mental health care co-ordinator who, at every appointment, would try to the refer me to the mental health trust’s in-house return to work team.
It wasn’t easy by any stretch of the imagination but it was much easier than what I witness happening now (see this piece from Listen Up! reporter Miles for an example).
The biggest help was being able to volunteer. This allowed me to find a new sense of identity, form new friendships after cutting myself off from everyone I knew, develop a sense of routine, get to grips with the new part of the city I found myself living in, attend groups (such as the peer group for self-harmers which I attended once or twice per week without fail), and travail various mental health waiting lists without fear of work preventing me from getting much needed treatment.
The freedom to work on myself and create a foundation on which to build a new life was crucial. I found ways of managing financially (lots of reduced food, not having a fridge, not using the heating, extremely rarely using the cooker) and I walked – a lot – which helped with social anxiety and physical fitness.
I got a relatively easy ride in the ‘benefits system’ and it was just enough to get me back on my feet. I look at Universal Credit, I speak to the reporters and friends, and I feel genuine physical fear at the thought of my mental health deteriorating again. It’s not being homeless again that consumes the fear (although I also dread that), it’s the ‘system’.
Treading a Fine Tightrope
Life is tough for me at the moment. My cat, who I’ve written about previously, died very recently, and I feel like I’m now treading a very fine tightrope of grief which may tip into full depression if I’m not careful. I’m always depressed – clinically diagnosed for over half my life – but there is a vast difference between the typical depressed me and the me in a depressive episode. It was one of those episodes which spiralled into a breakdown. It took me at least five years to recover from that breakdown. I’m not sure I have enough willpower to fight back from another substantive depressive episode. And part of why I think that is the knowledge I have about the care system in this country.
Much of the health and social care services in this country have been stripped to the bone. They function but only notionally. There are pockets of true care but only from individuals and some smaller organisations.
Some services, such as benefits, have become seemingly punitive in an effort to keep costs and waiting lists down. As my chronic illness is ‘invisible’ I know I wouldn’t receive compassion – I would be pushed and it would likely destroy me.
I’m scared that if I became ill again I would be punished for it by the services that were created to help.
What I’m Doing About It
So, what am I doing about it? I’m still on a waiting list for talking therapies, I’m being as honest as I can be with work/my partner/my friends. I’m allowing myself to cry and grieve. I’m not allowing myself to deviate from routines I created to build a sense of safety within me. I’m continuing to support reporters and do my other work in an effort to create meaningful, lasting systems change. I’m letting myself feel.
All while avoiding swimming, snakes, many legged insects, ITV2 and any questionable looking hotels. After all, some fears are easier to handle than others.
I’m reading this with a sleeping baby in my arms and shocked by yet another government stick being used in such a punitive system. This topic is close to my heart and you’ve written so powerfully and personally on it. Thanks for sharing.