I have no money, zero zilch no points and that was hard very very hard

I have been really affected by it, firstly I have no money, zero zilch no points and that was hard very very hard. Secondly I was physically and mentally exhausted just by trying to go through the motion. I would not wish that on my worst enemy. Could not eat not sleep, could not watch TV or do anything, too anxious. The assessment was bad, 30 minutes with a woman who looked bored and kept yawning. Not rude, just uninterested and was in a hurry to finish. She did not ask me many questions.
I suffer from a rare genetic illness that affects only 1 person in 100 000, it has several degrees of severity, mine is very severe and got
a lot worse in the past 10 years. It is relatively invisible to the naked eye but I have symptoms similar to those of fybromyalgia. My day can be hard with some days a lot worse than others, and my diet is very limited , have problems chewing and swallowing and all my food has to be minced or liquefied. I also experience frequent blackouts. The struggle to feed myself, wash myself and get dressed were not acknowledged in the least. It is like I am completely fine.
One of my specialists, my social worker and my MP wrote to them explaining that I do need help given that I am in a lot of pain and have no energy. Their reply was that I was assessed by a very qualified disability assessor and that PIP is not about diagnoses but about the help one needs to deal with daily life. In their opinion, the bored woman is the ultimate expert on the effects of my rare illness on my daily life. Still got zero points for my reconsideration. I can’t afford my carer anymore and I can’t go and live with my mum, she is 90 this year and not very mobile. Some days now I don’t eat or get up at all. When the pain is bad, I can’t make anything to eat or have a wash. What hurts the most is that they treat you like a malingering scrounger there just to milk the system. It is hard enough to accept that you are ill and all your limitations, being accused of making everything up is too much to bear.Bored and uninterested

Cygnet

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