You have probably heard all about the benefit changes that are going on because the papers have been plagued by headlines like ‘Mum-of-four dies cold and alone after benefits were blocked for missing meeting’ and other ridiculously, no need for hyperbole kinds of situations. Universal Credit is a huge point of controversy due to the enormous waiting time (6-8 weeks) for payments which is leaving thousands struggling in the interim and causing a significant increase in the need for food banks, free school meals and emergency council support. Another change is that Disability Living Allowance (DLA) is merging into PIP (Personal Independence Payment); for this transition all current claimants are asked to resubmit applications for the benefit and if these are not satisfactory to then come in for a face to face assessment, this includes those previously deemed unfit for work for life. In this instance you would have been placed in a ‘support group’ this allows you to do a small amount of low paid work each week in something that vaguely resembles the ‘incentivising’ work of the work house back in the Victorian period. Unfortunately the benefit system not only penalises you for maintaining wellness but also ignores the ways in which not working allows you to maintain this. It was therefore no surprise to me when i was asked to attend an assessment, after all I no longer had a wad of psychiatric reports, hospital admissions or erratic medication regimes with mind numbing side effects to ‘prove’ I was unwell (yes I know I’m using a lot of air quotations but they are required when discussing the benefit system).
As many of you will know I recently moved home and all was going swimmingly when a few weeks into my tenancy I was told by the council that my housing benefit would be reduced from £500pcm to £320pcm if I did not get approved for PIP. So suddenly what was simply a question of losing a lot of money became a question of losing a lot of money and potentially my home. As you can imagine this was mildly stressful and the result was that I no longer felt settled and became an anxious little mess. When anxious I listen to makeup tutorials because I find the voices calming (who knows!?) and it is testament to my anxiety that I now know way too much about contouring for someone not fussed by makeup.
When I arrived at the assessment a sweet little old lady came out and I did a little mini fist pump, after all how brutal and deceiving could a little old lady be? But as soon as the assessment began I could see that the questionnaire was simply not designed to address the needs of someone with mental health challenges. Full of questions regarding washing and basic food preparation the questionnaire largely ignored the changeability of mental illness and particularly for someone with an episodic diagnosis it was difficult to elaborate on how these related to me when I was being asked for percentages and facts. The reality is that I wont wash when unwell, I wont take medication let alone get hold of the prescription in the first place and I also wont eat or socialise (mmmm so attractive) and that when this occurs someone will need to do those things for me. Similarly, if I begin to feel unwell and my sleep deteriorates then what is useful is the space and time to allow myself to reign things back in, and that requires support and flexibility. The PIP assessment wants to know how often this happens in a week or a month and it’s hard to come up with exact figures when you have spent that time watching repeats of Fraiser and sleeping in late through a haze of sleeping tablets. In your average week those things may not apply but over a six month period they definitely will.
The second issue was the questionnaire ignored the ways in which having the DLA allows you to maintain such high functionality. What I wanted to say in the assessment was that the DLA allowed me the flexibility to stay well and ensure that wellness was a priority but there wasn’t room for this. On a day to day basis I am very high functioning but I think a large proportion of this is that I have so much flexibility to invest in self care and adjust my day to what I need. For example if I’ve had three nights of terrible sleep I know I need to whack myself out with some sleeping tablets as the risks of no sleep are high (literally), but if I needed to get up early for work I wouldn’t be able to account for the resulting morning dopiness and I’d be less inclined to do this, putting myself at risk. Similarly some days when I feel a little high I’ll get up early and go for a swim to try and tire myself out a bit, these acts of self care need flexibility to be effective. My current part time job is for a mental health Trust and I’m both passionate and exceptionally good at my job so they allow me this flexibility because they can see I’m worth accommodating for but not all jobs are like this.
What was particularly rubbish about the assessment was the way in which it demanded you to reflect on your restrictions and limitations, not your achievements. If you are someone with mental health challenges (although I imagine this applies to physical health too) you generally try to focus on the ways in which your illness enhances rather than restricts your life, after all reflecting on your late graduation, unemployment and daily maintenance can make you feel a little down. It therefore comes as no surprise that rehashing some of your worst moments and elaborating on the ways in which your illness limits you can bring up some difficult emotions. Whilst writing my application and providing evidence I was forced to pour over psychiatric reports that illustrated the severity of my Bipolar when unwell, these included things like:
‘Though her affect was reactive and she was well-kempt, she was extremely agitated and could not stop shaking her legs during the appointment. She feels that her mood is about a 3 on a scale of 0-10, with 0 being extremely depressed’ – Hmm not great
‘she is beginning to experience psychotic symptoms again. These are auditory hallucinations that are either talking to her directly or discussing her between themselves. The content of these voices is derogatory in that they tell her she is disgusting and does not deserve to live.’ – Not ideal
‘There was evident agitation, anxiety and tearfulness. Mood was distressed and objectively anxious and agitated with expressed suicidality along with some ideation i.e medication overdose or cutting’.- Sounds kind of shit
And this is not even the hardcore stuff.
Reading this material reminded me how unwell I can be and why I work so hard to maintain wellness; although an absolute pain in the bum it did make me realise how far I have come and how natural and instinctive self-care is now. When I called my previous CPN (community psychiatric nurse) to request a report of my ‘journey’ he reminded me of the time I ran out of a psychiatric appointment and hid in a bush and later under my bed because I was worried I’d be detained. These are not the actions of a well person but they were also a long time ago when my Bipolar was recently diagnosed and my treatment plan was not solid, I realised I do not give myself enough credit for how far I’ve come.
The whole transition from DLA to PIP has been one demanding reflection after another and I wonder how people who do not have a good support network around them manage this process. My mum came with me to the assessment and hugged me outside when I started sobbing, she then took me for some lovely tea and a damn good gluten free panini. At work I’ve had long supervisions with colleagues about how im doing and my Manager supported me in taking a day off to look after myself that week. I had streams of messages flowing through my phone both before and after the assessment from friends and family to check in and see how I was doing. I really needed that and it’s that support that has meant that when I found out my application was declined on Saturday I haven’t spiralled but sat and assessed my options. Full time work will soon be a necessity and whilst this initially instilled a small amount of dread I am choosing to embrace the opportunities this brings and the little shove this is giving me; as my brother said on Tuesday ‘sometimes life kicks you to the ground so you can smell the flowers’ – I mean it’s total bull but the sentiment is nice. I have chosen to take stock of my experiences and see the positives; for 27 I have a huge amount of life experience and whilst that’s not in employment it’s in the important things. I am empathetic, compassionate and understanding and when working in a care giving environment these are the traits that are meaningful, not how good I am creating a leaflet (although I’m pretty good, just saying). My experiences shouldn’t be considered by an employer as detrimental but as an asset and whilst not all businesses will take this view the ones that do are the ones I want to work for.
This week I have continued my alternative gratitude journal and whilst it contains things like pretty bicycles and cute dogs it is the words and beautiful people in my life that I am truly grateful for. Whilst I navigate this slightly daunting phase I would like to say a huge thank you to the amazing cheerleaders of my life who have led me to feel grateful rather than terrified.