Sunday, 30 April 2017

Friends without Benefits







I have been debating on and off, whether to include this in my blog about ‘living the dream’ as I adapt to disability and illness. I have commented/documented/moaned about many aspects of life at the elephant house these days. I have described my battles with trouser waist- bands, wondered if I were living in a foreign country, and asked why spoons should mark my limitations. I have battled skirting boards and doors in an effort to get used to my walker, and shown you how pain can sometimes inspire some very raw artworks….

But there is one subject that has absorbed almost all my energy in the last 8 months, and that is my ongoing battle to receive PIP. This is the benefit that is there to provide financial help for those unable to do simple household tasks, cooking, washing, dressing, and who have limited mobility. Essentially it is the benefit that acknowledges that you are disabled...and more importantly helps people pay for the things that help them to live independently ( which I would really struggle to do without spousal help and his love of me and his kindly tolerance of all things MEish and POTsie ;-) )

It turns out that in addition to having miniscule amounts of research funding, and a militia from the field of Psychiatry who are determined to prove that ME patients are mentally ill and have invented an illness that doesn’t exist…..we are also discriminated against by the Social Security System. This does not just apply to me, many in our online community are up against the same wall of indifference and cruelty...

I am lucky as I have support, not only from Mr H, but as an unexpected ‘benefit’ of this process I have connected with so many others who are being put through the same wringer and have received so much good and useful advice, together with cheer-leading words (‘ I will be shaking my pom poms for you’ stays with me!) Like pots forming out of muddy clay, new online friendships have started to take shape.

We also have a wonderful CAB benefits worker, who we did not involve until late on. But the point is this- you should not need psychological support or professional help to apply for a benefit, that according to the DWP’s own definitions, you are entitled to (which I am).

The form I had to fill in was very complex to the point that even with someone else reading the questions and writing the answers,as I lay on the sofa with my eyes closed, it made me sicker. I am lucky enough to have a GP who not only understands my situation, but is happy to commit what my limitations and difficulties I have, to paper. Other friends of mine are not so lucky. I was also fortunate enough to spend 2 weeks at a hospital specializing in ME last year. I have a wonderful Occupational Therapist. So... with much paper work from professionals, and right on my side, I felt quietly confident.

Yes….you can guess the rest. I am now awaiting my appeal against an award of ZERO, nada, nil award. Apparently I am able bodied! I could hardly wait to give my body the good news, that it could just get off my backside and start acting normally!

The case will be heard in a Magistrates Court. I feel as if I have committed a crime and are being held to account...and my punishment could well be that after 11 months of stress ( the date of my appeal is likely to be another 3 months away), I will receive nothing. The case seems to rest on the fact that they don’t believe: me, my GP, my OT, my ME specialist and my local MP ( who is supporting me). I am not exactly confident.



No one has been able to tell me why anyone would put themselves forward for this hell if they did not genuinely qualify. If you are thinking that it would be possible to fake any of this to get free money- I can tell you that it is not. I have had jobs, I have earned money, and trust me, being ill is the hardest work I have ever done...and absolutely the least lucrative.

My emotions have gone down and down throughout the waiting. I feel very humiliated by the process of having to sit on the road of life and just beg. Not only have I not been given any coins, I feel as if my cap has been stolen and my faithful dog kicked.

Initially I was slightly in denial that I needed as much help as I do,….but after trawling through my humiliating limitations in the sort of detail that my best friends don’t know about me,(the bra I can’t wear, how long it takes me to recover from a shower, the walking I can’t do). I now felt proud to call myself ‘Disabled’ I had no idea what they -we – have to go through, to survive.

I pushed myself very hard to write the mandatory reconsideration letter, which I believe has contributed to the last 3.5 months of flare up.
This period of time, when pain and limitation have been the worse they have been for over 20 years, has made me feel even more determined to get what I deserve and need. The irony of being told that I am not disabled -at a time when I was struggling to accept that I AM disabled- has not escaped me. If I can share my experiences of the form, the ‘medical’ , the mandatory reconsideration, the appeal process...and demystify at least some of these processes, then I will at least feel there is a point to all this.

The benefits system feels like an incredibly personal kick in the goolies, when in fact, the one thing the system does well, is to NOT treat you like an individual. The goal is to save money and people like me are collateral damage.


Becoming disabled is not a lifestyle choice- it isn’t on anyone’s bucket list. I am happy to have the support of friends also tangling with the benefits system, but I wish with all my heart that they didn’t have to suffer alongside me.