You’ve got to fight - for the right - to...

Yesterday was the culmination of, on this occasion, ten months (in total, over six years) of fighting for something to which I’m legally entitled (PIP – Personal Independence Payment).  For almost an hour, I was grilled continually by a panel of three appointed individuals (a judge, a doctor and a workplace disability specialist), in order to appeal a decision made by DWP assessors previously in the year. 

The process of applying for PIP is notoriously lengthy.  Unpleasant and painful past experiences meant that I was somewhat reticent in my desire to once again put myself through what I knew could be a very difficult ordeal but with words of encouragement from my sleepy friends combined with a desire to not let the system beat me, I forged ahead.

The first stage (April 2015) was a phonecall to DWP providing some personal details in advance of a form to be completed in writing.  Then followed the arduous completion of a ‘How your disability affects you’ form consisting of 35 pages, which was submitted with the support by a letter from my wonderful Narcolepsy UK advocate, along with numerous items of evidence from people such as my consultant.  The next stage (June/July 2015) was an assessment courtesy of ATOS Healthcare, which resulted in a report, aka ‘rejection letter’, that seemed to uncomprehendingly twist, manipulate and inaccurately represent the conversations and other actions of the assessment, provoking in me a tumultuous mix of indignation, anger, frustration and hurt, the result of which = severe exacerbation of existing symptoms.  Deep breath.  The next stage (August 2015) was the ‘mandatory reconsideration’ stage – basically, a reasoned request that the decision be re-examined, and the result?  No change whatsoever.  So, to the appeal stage (October 2015) it was.  Four months and one 105-page appeal pack later, and yesterday I finally got my day in court, both metaphorically and literally, as the tribunal took place in a Magistrates Court.

I don’t have the energy to go into detail but to my relief and surprise (my faith in the system had thus far been ground-down to virtual non-existence), my appeal was upheld.  Although I was not awarded all of what my experienced advocate felt to which I was entitled (and what many other PWN are receiving), to me it still felt like a victory.  And, whilst the financial benefit of being awarded PIP will of course go some way in taking off a teensy bit of the edge of the challenges of living with a lifelong debilitating neurological disorder and with a lifelong pain disorder, to me, the continual lack of recognition of the impact and seriousness of these diseases was probably what had hurt the most, and to have these impacts acknowledged, if only in part, felt good.

One day later, and the modicum of doubt that will remain until I know for certain that DWP have accepted the outcome of the tribunal is still niggling away.  Perhaps rather naively, although I was aware of the stress the lead-up to the tribunal had been creating, I was not at all prepared for the emotional wreck that I appear to have morphed into overnight.  I feel drained, exhausted, over-sensitive to everything, and if not sobbing into my poor soggy T. shirt, permanently on the brink of tears.

Not many people outside of my sleepy circle were aware that I was going through the PIP application process – perhaps there was still a part of me that feared rejection from those I considered friends as well as from those in the decision-making process.  Despite ongoing increased awareness, Narcolepsy remains a hugely misunderstood condition, and unless you live with it (as with any chronic disease), there is no way that you can begin to comprehend how downright weird, frightening and debilitating it is.  Twenty five years after my first sleep attack, and it still frightens me, although I, for one, have become pretty adept at ‘hiding’ it from those around me.

So, life goes on.  And for those of you out there going through the PIP process, stay strong, keep your dignity, never stop fighting, and don’t let the b***ards grind you down!

With huge thanks to Rebecca from Narcolepsy UK for being there throughout, for fighting my corner (for me and on behalf of our wonderful sleepy community), and for generally being a star.  For more info about Narcolepsy UK, see: http://www.narcolepsy.org.uk/