When first diagnosed with diffuse cutaneous systemic sclerosis I felt like one of "THEM!", a creature from a 1950's black and white sci fi but as I found other people with scleroderma I felt less isolated, less freakish and more human again. The review process has made me feel like a hunted species with no dignity but a price on my head. Okay, clearly I have a flare for the dramatic but as I prepared to complete the 20 page form from the Department of Work and Pensions, hunted, well maybe just hounded, is how I felt.
Said form asked many useful questions but also some bizarre ones, well bizarre to me as I could not see how they assessed my ability to work, or lack of. Questions like "can you pick up a £1 coin, can you pick up a cardboard box?" Who cares? How can this possibly be a relevant question for assessing how disabled I am and what my capabilities are? Better to ask for letters from specialists who are able to assess what my capabilities are. As it happens they've been seriously limited for a long while which is why my former employer determined back in 2008, that I could no longer work, would never be able to again, and in recognition of that awarded my occupational pension to me at the age of 40.
I am very thankful to a lovely friend, who used to complete these forms for a living and helped me complete said form. This lovely friend did so at the drop of a hat as I had left said form sat on the side for weeks. Even though the completion deadline loomed, even though I know I can't work, I froze at the thought of actually filling out said form. Ironically people working the system have no such qualms, after all, they can always get a job should they be declined.
Here's the thing that really bugs me about this whole process, back in 2007 I was busy being busy at my career, I would grab a tall latte from my favourite coffee shop, wander in to work, sit at my desk and enjoy the whole day. I actually looked forward to going to work and did not expect it to end so abruptly and horribly. Even as I became ill, even as colleagues began commenting on my obvious symptoms I kept working. I only went off sick because my manager sent me home after I admitted that working was making my symptoms worse. I didn't sweat it as I had an upcoming appointment with a rheumatologist at which I would be diagnosed, prescribed treatment and then return to work in say 3 months or so. I never expected to be told I had a rare, incurable disease from which I would never recover. Yet, in the wake of such a diagnosis my first question was when could I go back to work! Needless to say the answer was ill health retirement and although I rejected this as ludicrous at the time it came to pass some 14 months later.
I would never have abandoned my career if there had been any chance of being able to keep it and being a responsible, motivated, intelligent person I know that I cannot work and if I could work I certainly would work. Who chooses to receive measly benefit rather than a plump salary? Certainly not me! Who chooses to partake in this difficult, stressful review process? Certainly not me!