I don’t even know where to start with this. Grab yourself a cup of tea or a gin and get comfy because I’m going to talk about universal credit. Again.
Yesterday I had my second “commitment meeting” at the job centre. This is part of my application for universal credit, something that I opted in applying for after being put on long term sick leave due to my health. You can read about my first appointment in my open letter to Theresa May.
I had already uploaded my CV to my universal credit account, but I still had to sit through a lengthy explanation of how to write a CV. At this point, I was still fairly calm and wasn’t on the verge of killing anyone, so I politely reminded my work coach that not only do I have a CV, it is a robust CV and a CV that has resulted in me being invited to interviews, more often than not being invited for interviews. But this is a box ticking exercise, so I sat there as I was told about how to write a generic CV and upload it in job search websites. I pointed out to my work coach that actually, I tend to tailor my CV for each application and was unlikely to to uploading my CV onto job search websites, due to the nature of work I am hoping to do, health permitting and instead would be applying directly through charities or the county council. But what do I know?
On this note, my work coach then asked me what work I would like to do. I stated that I was offered a job in children’s social services but had to turn it down due to being sick numerous times a day, malnourishment and exhaustion. I’m getting bored of saying it, but it doesn’t seem it be sinking in. I said that I would like to work in children’s social services and explained what my previous jobs have been. I also said that I’m interesting in writing but I’ve been told that I can’t do that because I won’t earn any money. Okay then.
And then we moved onto to how I can prepare to go back to work. You guessed it, I reminded him about being sick numerous times a day, malnourishment and exhaustion. Like in my first commitment meeting, I was asked when I am going to be better. I. Do. Not. Know. But being ill is not an excuse to not be working, so despite the fact that I am medically signed off, we had to discuss all the ways that I can ensure that I’m work ready. I sarcastically said that maybe someone should find a cure for the various chronic illnesses that I have, but that was ignored.
So, I have to ensure that my CV is kept up to date. I mean, I am gaining so much experience which must be added to my CV when my head is hanging over the toilet and I’m getting nose bleeds due to the amount that I’m vomiting. But being ill is not an excuse to not be working. I also need to make sure that I am regularly looking at job websites. I started to lose it a little bit at this point. With a shaky voice, I asked why I would do that when I am medically signed off work. I so desperately want to be at work. I want to be earning a wage, like all my friends. But right now, that isn’t possible. Why would I essentially torment myself by looking at all the jobs that I want to do but am not well enough to do?
But I need to be work ready. Because according to my work coach, I am available for interviews immediately. I am available to start work immediately. Being ill is not an excuse to not be working. I explained yet again that I am being sick numerous times a day, that I haven’t eaten a proper meal since the 1st February and that I am malnourished.
And my work coach uttered the fatal words “I understand.” No. No you do not. I asked him if he was in chronic pain, every single day. I asked him if his joints dislocate when he takes his jumper off. I asked him if he was being sick so violently that he was passing out on the bathroom floor. I asked him if he was crying over a small packet of baby food because he was so terrified about consuming something, knowing that it would make him sick. I asked him if he had lost all of his dreams and aspirations.
By this point, I was crying. I was crying because I am so angry at the system. I was crying because I’m sick of every single day being a fight. I was crying because life is bloody unfair. Then I was crying because I was angry about the fact that I was crying, because it made me look weak.
I think the worst part of the meeting was when I asked him if people diagnosed with cancer would be asked when they will be work ready. He told me that cancer patients would be asked when their treatment was expected to finish. That makes me feel utterly utterly sick.
Even after going through the ordeal of these commitment meetings, I have to go through a work capability assessment, where someone who has never met me and is unlikely to have heard of anything that I’m diagnosed with will decide if being ill is a valid reason to not be in work.
Part of me wants to give up and spiral into debt. After my meeting yesterday, I got home and had to go to bed because I felt so ill. I’m already ill, but the system is making me more unwell. I should not be facing being in debt because the system which is meant to help me is making me more unwell. But that’s the reality.
Following the completely overwhelming response to my open letter to Theresa May, I posted the letter to her, along with a copy to my local MP, Layla Moran. I highly doubt I will get a reply from Theresa May; she simply doesn’t care enough to respond but I really hope that I will get a response from Layla Moran. I’m in the process of arranging to meet Layla at a constituency meeting to discuss this in person. I’ve been approached my a few organisations about having the open letter published, which I never ever expected, but it’s happening. A number of people have said that I should contact the media about this. I’m still deciding about whether I want to do that.
Fundamentally, I feel that I have to fight this. I have the ability and determination to fight this messed up system. Not everyone does and I feel that I have to stand up and fight for those people. This isn’t just about me anymore, it is for every single person who has been faced with such horrendous discrimination.
I don’t know how I’m going to fight this, it’s overwhelming and scary and I need your help. Please share this post on your social media platforms and if you feel able to, please speak up.
Illness will not silence me.