The Downside of Being Able to Hide My Pain and Sickness

Despite increasing medications and physio, I have spent the last year, and last month in particular, with decreasing energy, increased pain and new symptoms which remain undiagnosed. I am doing worse now than I ever have in the last three years and as I am unable to work, I knew I needed to do something to bring money in.

I had applied for PIP (personal independence payments) before when it was only my eating abilities which were affected and didn’t expect to necessarily receive any money but was given six points. However, this was not enough to get any money.

Having gone through the process before I was nervous to do it again so I decided to go to Citizens Advice who sat with me and helped me put together my evidence and write up my application. At the end of those couple of hours the representative told me he believed I was eligible for at least one part if not both and would therefore be able to get some financial assistance. This would help me and my family who I am now forced to live with as I am unable to afford to live alone and am physically incapable of doing so.

It took a number of months but eventually I got a letter telling me they would visit me at my house in a couple of weeks time to assess me. I was nervous to do the assessment but knew what I was supposed to do and felt ready to do it and when it was over, I was fairly confident my symptoms and daily struggles would clearly show how disabled I have become.

Just a couple of days ago, I received a letter in the post marked with “DWP” – the department for work and pensions. As soon as I saw it I started to shake. I was still pretty sure I would be given some financial help and if it didn’t seem that they had given me the fair number of points, I was already planning how I would appeal. I carefully opened the envelope and the first thing I saw were five or six numbers which were all the same: 0.

As I read more, I realized the 0 meant no points rewarded for that section. Despite my pain, difficulties walking, extreme fatigue, nausea, dizziness, neuropathy, days without eating, etc. I was given 0 overall! To get the minimum amount of support you need 12 points in each area!

Just as I was reading the personalized letter written by some woman who had “fairly assessed” my evidence, application form, doctors’ notes and the notes taken by the assessor, she did not feel I was eligible for help. I won’t go into why I think this is wrong and unfair but I will explain how I felt and what I am going to do now.

What Now?

Although I was prepared to appeal, doing so on 0 points is practically pointless! It’s possible to change their minds a bit with some further information and by showing how much you are affected, but my chances of going from 0 to 12 or more in two areas is almost zero. Apart from that, it would be extremely embarrassing and ironically, it’s likely I wouldn’t be able to attend a hearing as either I won’t have energy, will be too ill or in too much pain or I will have used my energy to go to uni and look after myself.

This leaves me with one option – do absolutely nothing. I was never told or even asked to apply for this but right now I am living in my parents’ overcrowded house, often not able to help physically even with the dishwasher (due to pain caused by bending over or standing for periods of time) or doing the washing (as this involves going up and down stairs in a short space of time). I have had to move in with them because I am too ill to get fully involved at uni and have even had to change my course slightly to enable me to complete it. I frequently feel useless and really struggle when the subject of having to move houses because this one is too expensive comes up, or when I am home alone because everyone else is working or doing necessary things to keep the family afloat and I am in bed. By applying for PIP I was hopeful I would at least be able to contribute a bit to the household and feel like I am doing my part, but I guess that is not to be.

Feelings

I received the letter a few days ago now, yet I still feel very emotional when I think about it. Yes, the rejection hurts and the disappointment too, but more than anything else denying me of this financial benefit doesn’t just mean I can’t put money into the family fund but it also says they don’t believe I am sick enough to be disabled enough to get this money. The latter bothers me much more.

Now, to lots of others who deal with autoimmune diseases, genetic conditions and other chronic illnesses, this might be something they would be very happy about but as someone who has fought for more than 10 years for one diagnosis and more than two for others, this lack of labels makes me feel like no one believes the pain I am in, the fatigue I feel every moment of every day, the nausea and sickness and cramping pains in my stomach and chest when I cannot physically eat or when I actually physically cannot look after myself every day without help.

For years I have accepted that if they want to think that, then that is fine, but now, I have begun to believe them and find myself wondering more and more frequently whether maybe I am just making it up. Maybe it’s “all in my head.” Maybe if I think more positively I will be fine. Maybe I just don’t want to be better. For brief moments I believe all this and I get up and shower, wash my clothes, hang them up and make lunch. But then reality, true reality kicks in and all my symptoms come back again. They come whether I am at uni, out with friends, at home, celebrating my birthday or Christmas or going on holiday. At this point I realize that if these were in my control, would I not be able to be OK when I wanted to be?

It is then I recognize that the only one who truly knows how I feel and whether or not I am disabled and need help is me and that should be enough.

This post originally appeared on The Online Life of Laura Blog.

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