In light of the government’s recent plans to cut ESA, I felt it would be important to tell my story that is the whirlwind experience of being lost within the benefits cycle.
Those with long-term illnesses like my self are unable to work at no fault of our own. However, when you can not work you have no earnings, you lose confidence and in some cases, your condition can deteriorate. Yet all of those factors considered you are forced to apply for benefits that make your situation worse. When I applied for employment and support allowance I had to idea what to expect yet didn’t expect to be faced with such a horrible experience. I was in the mists of finally getting a diagnosis but, as I am sure you all know, appointments for specialists are very hard to come by and even if you are referred the waiting period is endless.
I live at home with my family and as much as much as I may be in a better living situation than others, at 22 I wanted to be able to pay my own way and not have to rely on the generosity of my parents. This is what drew me into ESA as I felt my condition was progressively getting worse and I needed some sort of financial support to get me by.
I phoned ESA and made my initial claim which consisted of a series of somewhat unrelated question. However, in hindsight, this was the easiest step and did not prepare me for what was to come.
After completing the 50+ page booklet that I had been sent detailing different aspects of my health and how they affect me from day to day the waiting game began. Unfortunately, at this point, I had no evidence in terms of necessary documents so my decision was solely being made from the booklet I had filled in.
Soon after this, I had a medical assessment. Now at this point, I thought that I would actually be seen by a qualified medical professional but, oh was I wrong. I was sat opposite a young man who was quite clearly there to just type and read questions that had been provided for him. It was so reassuring to know that my benefit was going to be left in the hands of such a “professional”. The medical assessment basically consisted of me re-answering the questions I had previously filled out and a test of simple movements such as moving my arms, legs and bending down. I felt very intimidated by the whole experience as I felt like I was being interviewed. They seemed to be trying to catch me out as if I would pretend that I wasn’t well enough to work.
Weeks after this the dreaded letter arrived in the post stating that I had been awarded no points and was therefore deemed fit for work. In all honestly in the eyes of these people if you can talk, type and you look well you are the picture of health. I was gutted as I knew this was only going to be the beginning. The medical assessment does not cater for those with an invisible illness which makes it near impossible to not be overlooked. I had to then go through a mandatory reconsideration detailing why I felt that those who made the initial decision were wrong and hope that the original decision would be overturned. It was not.
Now my final stage was to then apply for a tribunal hearing. I don’t know how anyone else has felt in this situation but, I felt like a criminal. I had no idea it would be so hard to get even the smallest amount of support. Long story short sitting in front of the judge and a qualified doctor was a seemingly horrible experience. Any answer I gave to their questions was torn apart and I was left with no leg to stand on. As the condition affects me from day to day and brain fog can leave me unable to think clearly the judges only response was that I would be capable of working a part-time job as a cleaner or receptionist as these jobs do not take any real intelligence. I was upset and insulted by her blunt remark and at this point, words had escaped me. Their decision was not changed and all I was left with was a piece of paper stating that I was fit for work.
Since then I have had to claim Universal Credit and look for work even though I did not feel fit enough to do so. I managed to get to the interview stage of a job, funnily enough, working at the job centre as a work coach but, as the interview drew closer I was becoming more unwell and was unable to attend.
I am now in the process of applying for ESA again as I have no other choice. I am in a slightly better position than I was the first time around as I do have a diagnosis however, I still do not have enough evidence to back up my case. I am hopeful that within the 13 week period I will be placed in the support group and deemed unfit for work but, at this time I can not predict what the future will hold. I do also now have the support from a Fibromyalgia group that I attend and the ladies that I have met have been so helpful and supportive.
I feel that doctors are not fully educated in Fibromyalgia and do not understand how debilitating and exhausting it can be. As they are the first point of call when battling for a diagnosis I feel that they have essentially jeopardised my chances of being able to claim as the essential tests have not been done and the referrals are not being correctly made.
I never wanted to be on benefits. I would love to go back to work and start building a career but, right now this is not within reach and I am not well enough to do so.
I am happy to answer any questions that people may have and I have added a list down below of some of the things online that I have found so helpful during the early stages of reapplying for ESA.
A few useful links: