Unfair Benefits System

Unfair Benefits System

Be prepared for a bit of a rant here because it’s a subject which I have had experience with recently and I can relate so much to the story I am going to share.  First, here is a link to a story about a woman who has just committed suicide because of an unfair PIP assessment.  It’s really heart breaking.

Article

This woman suffered from ME which is something I also suffer with.  It’s a debilitating disease which makes you exhausted constantly, it causes sleep to be unrefreshing which means sleeping does not help or rid the exhaustion.  It causes muscle and joint pain which requires a lot of pain killers and sometimes cannot even be treated with that, it leaves a lot of sufferers bed bound.  It causes a lot of symptoms cognitively, like memory issues, brain fog, lack of concentration.  There is no known cause for this disease, I contracted it after having Glandular Fever.  There is no treatment and barely any research, a lot of Doctors believe the condition to be a mental illness in which the brain signals pain when there isn’t any but recently studies have been carried out which show it could actually be a problem with the immune system not working properly.  It is an invisible illness though, which means it is ignored and misdiagnosed a lot.

I recently had my PIP claim (Type of benefit in UK) reassessed.  I’d been receiving the benefit for two years, due to the fact my severe depression and anxiety had prevented me working.  I have been suffering with ME for close to two years and it’s been a nightmare getting any treatment or help, I have to sleep almost constantly, I get about three hours a day where I am able to do household chores and that’s it.  I suffer with horrible back pain and pain in all of my joints and muscles which I take strong painkillers for and I rarely am able to leave the house.  Despite this my reassessment was rejected.

Like this woman in the above article, I had a face to face assessment.  It was carried out in my home because my anxiety prevents me travelling to places I don’t know.  During my assessment I felt extremely uncomfortable and my anxiety was so bad that I could only give one word answers.  What annoyed me about this face to face was, the assessor never asked questions from a mental perspective, my main issue is mental illness yet she only asked me physical questions “Can you get in and out of the shower”, “Can you dress yourself”, “Can you use the toilet”.  I can do all of these things but as people with depression and ME know, just because you can physically do these things, doesn’t mean you do.  I have no energy to get dressed or take showers, which means I  an go a week without washing sometimes because I am that exhausted and can’t get out of bed.  I need a lot of prompting to take care of myself and this was completely ignored.  I was asked one question about my ME and the assessment was over in 40 minutes.

Three or four weeks letter I received a letter to say my claim had been denied.  I received no qualifying points and the letter I received which explained the decision was disgusting!  It stated that the face to face assessor had written I appeared completely relaxed and showed no signs of anxiety.  This was completely false, I was sweating profusely, my heart was beating erratically throughout and I couldn’t talk.  The letter also stated that because I had not attempted suicide in over a year, my mental state was fine.  This comment is extremely offensive to me and I am so disappointed in my countries benefit system.  Suicide is such a sensitive issue and they basically told me I don’t deserve help because it’s been over a year since I tried to take my life.  The letter went on to say that physically I was able and healthy and did not warrant any further financial help.  It was a completely false report of my condition and it left me devastated.  My Mum went out of her way to appeal the decision and luckily I have a great GP who wrote a letter also.  I know how the woman in the article felt, because I felt the same way, I felt so betrayed and unfairly judged by my country.  These people are supposed give benefits to people who need them, they are supposed to help.  How many people sit on jobseekers allowance and don’t lift a finger to find work, yet they get money ever month no problem.  I suffer with illnesses which may be invisible but they are extremely real and I don’t deserve to be ignored and shoved aside simply because my illness are to complex for the benefits system to understand.

The woman in this article took her own life because some person in an office somewhere decided she wasn’t worth the trouble, that her condition was to complex and since it’s invisible, it can just be ignored and turned away.  I don’t know how this assessor can live with themselves knowing that they ultimately made a decision which ruined someone’s life and made them give up on life and choose death. I used to think my country was a fair one, I used to be proud of my home but I am utterly disgusted by it now.  The government doesn’t care about how unfair their system is, they spend no time investigating the people that claim benefits fraudulently and instead spend their time taking if off people who are vulnerable and can’t stand up for themselves, they force people with invisible illness to suffer and struggle because it’s easier to ignore something you can’t see than to address it and take it seriously.  The woman in the article took her own life surrounded by her benefits letters stating that she was healthy and able, basically calling her a liar.  I know how this woman felt and it’s so saddening because these assessors made her feel like her life was worthless and unimportant, they treated her like a case number and not a person.  People suffering with illness deserve respect and understanding, they deserve to be listened too and treated with kindness, this woman was given none of this and yet nothing will be done about it, the government and the benefits system will lock it away in some filing cabinet and forget about it.

I’d like to say at this point that my own benefits decision was overturned and I did receive my claim.  I had to fight tooth and nail for it, I had to send piles of evidence and statements from people who know me.  It made my mental state deteriorate badly and my illnesses were made worse by the stress and anxiety I had to deal with.  I got no apologies for the way I was treated, no sorry for the completely false statement given by the assessor and no support during the time I had to wait and worry about the decision.  It may have come out positively in the end for me but it doesn’t for a lot of people, so many people are put through more suffering and ignored because their illnesses aren’t common or easy to see.  I’m disappointed in my government and I’m disappointed in the people that are supposed to help us, who are supposed to make out lives easier and help us live independently despite out illnesses.  It’s unacceptable.

 

 

But you look fine.

But you look fine.

One of the most frustrating things about having an invisible illness is people telling you that you look fine.  I understand that it’s hard to relate to someone with an invisible illness but what isn’t acceptable is when people doubt you, when they judge you and make comments about how you should be doing more and it’s laziness not illness.

I have more than one invisible illness, I’ve suffered with depression and Anxiety for 5 years and I’ve had CFS for two years. Every day I struggle with these conditions and if that struggle isn’t enough, I have to put up with people making comments and judgements because on the outside I look like a normal person.  What’s worse is the feeling that I have to prove my illness to people, that I have to give them evidence in order to get them to believe me.  One of the most upsetting things for me is not being able to work and earn my own money and it’s really hurtful when people say I’m just lazy and want to live off my Fiancé for the rest of my life.  I’ve worked before and before I became ill, I was an independent person who wanted to rely on only myself but illness changed me and I’m forced to live off someone else and rely on someone else to support me.  I love my fiancé and I hate that he has to work and all his wages go on our bills and food before he has any for himself.  I hate putting pressure on him and I hate sitting at home while he’s out working full time to provide for me.

Some people think I’m taking advantage, they think I’m lazy and using my illness as an excuse not to work and it’s really upsetting.  I wish I could give people a glimpse into my day and show them what I have to go through.  I wake up at 11am most mornings and all I feel is exhaustion and aches all over my body.  It takes me an hour to get out of bed because a nights sleep doesn’t refresh my body and I’m still so exhausted that I’m falling back asleep, trying to move all my limbs is painful and requires all my energy, energy that I don’t have.  My depression sucks my motivation and tells me to stay in bed and just die there because I’m useless.  Some days the pain and fatigue is so bad that I do have to remain in bed all day and this often means no food or drink because I’m too exhausted to do anything but go to the toilet which is ensuite and near enough to get to. Most days I have to stay in pyjamas because sorting out clothes and getting changed takes too much of my energy.

If I somehow push through the pain and fatigue, I get up and I make breakfast which is usually cereal because I don’t have the energy to do much more, some days I’m too tired to even do that and I go without.  I take my antidepressants, painkillers and vitamins which my Fiancé leaves out for me, the rest of my medication is locked away to stop me attempting to overdose and kill myself.  By now its 1pm and all I’ve managed to do is get up and have breakfast.  If it’s a good day, I’ll wipe the kitchen down, wash up and tidy the living room up, after each of these chores I have to sit down and rest for 15 minutes to get my breath back and muster the energy to carry on.  Some days, all I can do is wash up and it takes all the energy I have so then I’m stuck sitting on the sofa watching awful daytime television and wishing I could be out and doing things.

At 3pm I see all the children walking home from my window and feel awful because they’ve been up since 8 and learning.  By this time of day, I’m falling asleep again and need to go back to bed, this means I skip lunch.  I will sleep for three hours and then my Fiancé will have to wake me up because it’s dinner time and I won’t have eaten since noon.  My fiancé will have to cook because I don’t have the energy and my head feels so foggy that I will forget to take things out of the oven, or even forget to turn the oven on.  My fiancé by this time has done a full days work and he’ll thank me for whatever little chore I’ve done round the house, even though it’s nothing compared to what he’s done all day.

I’ll eat dinner and spend a couple of hours watching my Fiancé playing video games, games which I used to enjoy playing but now can’t because of the pain in my wrists and hands.  I’ll try to read a book which I love but a lot of the time I’m too tired and don’t have the mental energy to even do this which means I’ll end up falling asleep on the sofa.  Eventually my Fiancé will wake me up and we’ll go to bed, after another dose of painkillers to knock me out.  I’ll sleep for 12 hours and wake up feeling exactly the same because rest doesn’t help me.

So I don’t want to deal with people judging me because I barely have the energy to look after myself let alone stand up for myself.  Their comments hurt and make my depression thrive but there is nothing I can do to alter their opinion because my illness is invisible.  Even people that support and love me sometimes forget how ill I am, because they can’t see it, they think it’s easy to get over, easy to forget I am suffering.  I appreciate everything my Fiancé and family do for me, I hate having to rely on them and I hate being a burden.  I wish that my illness would manifest itself visually on my body so people could see and I wouldn’t have to live with the doubt and hurtful comments but it doesn’t

My illnesses are invisible but they are real and to be told I’m just lazy and don’t want to work is insulting and deeply hurtful.  I shouldn’t have to prove myself, I don’t have the energy to do so.  I don’t want to live like this and people insisting that I do because I’m lazy is depressing.