Dear Mr Bleep Bleep
I am writing regarding your letter dated 20th February 2018, informing me of your decision that I am not eligible for the Personal Independence Payment. I can now count myself among the ‘walking and talking’ 88% of people who have been refused this financial support. I am vexed to say the least, not just with your completely ludicrous decision, but with the condescending tone of your letter and complete lack of empathy.
I was dubious about applying for PIP as I had heard such horror stories about the assessment process; chiefly that the health professionals who carried out these appointments were there to ‘catch you out’, would twist your words and would have ‘spies’ in the waiting areas to see if you were laughing, or looked too happy etc, suggesting that you couldn’t possibly be ill if you were smiling. But, on the advice of my GP, the people at the Job Centre as well as my local CAB, I applied. They all thought my circumstances were such that I should be in receipt of PIP. Note Sir, that these are all professionals who know me and my history of illness, debt and hardship, people who have seen me crying and desperate, whereas you, who have made this decision, do not and have not.
I had to cancel my first appointment due to suffering with a horrendous migraine, which is one of my disabilities. I was feeling extremely anxious about the assessment over the previous few days and could not sleep for worrying, given what I had heard about the process. The next appointment I was offered, I felt similarly, but my sister came with me for moral support as it was made very clear to me that having cancelled one appointment already, a second would not be granted. My sister drove me to the appointment, as otherwise anxiety would have kept me at home. I stressed to the lady interviewer, as I stress now, that I was extremely nervous; in fact, my hands were shaking so much I could barely hold my drink. My sister is a witness to this and was there to reassure me, as did the lady interviewer. She put me at my ease when I told her that I was anxious, assuring me that there was nothing to worry about, she’d just ask me a few questions. I was pale, I was scared, I was in distress, yet in your letter you have written ‘you engaged with adequate rapport and no evidence of being withdrawn or anxious during the assessment’. I went to the assessment terrified out of my wits, so terrified that my sister had to support me. Would it have been better if I’d been rude and obnoxious during my appointment? Or if I’d not said a word, pretending to be a deaf mute? Or rocked back and forth, foaming at the mouth? Or maybe if I’d looked the part? Would dressing as Miss Havisham and lamenting mournfully at my misfortunes have helped? Would any of those things have proved that I was in distress, more so than telling the lady openly and honestly at the beginning of the meeting that I felt that way? No Sir, because I am not an actress, nor am I out to deceive anybody. I am a normal woman, with several unfortunate ailments that restrict my daily living and my life in general. All I was, and am, looking for is some extra help, which is there for people in situations such as mine and something that I should be entitled to and badly need.
Did you know that over the month of February I was awarded the grand sum of £344 by Universal Credit? No, why would you? Why would you even care in fact? I lost my beloved job last month due to ill health, the second job I have lost because of these illnesses that I cannot do anything about. I have had to give up my college course and my plans to go to University this September. My whole life is unravelling due to these illnesses. Imagine having to pay your rent, your bills, buy food and keep yourself for one whole month with just £344, whilst feeling ill, exhausted and hopeless? I bet you can’t. Let me tell you it is horrendous. And shameful. And ridiculous. Britain is one of the richest countries in the world and the government that you work for are letting its people fall into poverty. I had no choice but to use a Food Bank last week. That’s something I never thought I’d say, or do, but I had to. I had nothing. No money. No food. No gas. No electric. No reason to get up in the morning. I was desperate. The PIP money would have helped me. It would have eased my stresses and I could have breathed a sigh of relief that this month I could have eaten properly, my rent would have been paid on time, the gas wasn’t going to run out. I would also have felt a lot less poorly, because the stress of trying to keep a roof over my head and food in the cupboards and gas on the meter is keeping me run down and more susceptible to infections and viruses.
Let me explain a little bit about Migraine. There is no cure for them. I have had them since I was 15 years old; they are hereditary, with my mother and grandmother suffering too. Neither my mum or grandmother have been able to work due the havoc they wreak on one’s body and wellbeing. They are a curse. I have seen specialists over the years and there is no cure. Only drugs, which I take regularly, or Botox, which I do not want injected into my body. I have tried many different treatments over the years and nothing has helped prevent them. As well as the physical pain of a migraine and the associated sickness, there is the ‘migraine hangover’, which can last for 3-4 days afterwards, leaving you sleepy, unable to concentrate and groggy. On average I have about 8 migraines per month. That’s a minimum of 8 days in bed with the migraine itself, maybe 16 and then around 16 days of the ‘migraine hangover’. You do the maths.
Now, let me explain a little about Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS). ME/ CFS is a long term, fluctuating, neurological condition where sufferers experience severe, persistent fatigue associated with post-exertional malaise, which is a result of the body’s inability to recover after expending even small amounts of energy, often leading to a flare-up in symptoms. Those symptoms in my case are inflammation of joints, pain when moving, extreme, overwhelming fatigue, lapses in concentration, short term memory problems, migraines, frequent tonsillitis flare ups, flu-like feeling, near constant steady stream of coughs and colds, even in the summer months. The symptoms fluctuate depending on how well I have looked after myself. For example, working a 40-50 hour week at my previous job left me in a terrible state physically. I was too tired to cook when I got home, I would regularly vomit after driving home in the dark as the lights affected my vision, causing vertigo and my joints were so painful I felt like I had aged beyond my years. ME is a unique illness; it is diagnosed by ruling out everything else and there isn’t a lot of research as to how or why some people get it. Specialists assume I got it because I was unfortunate enough to contract Glandular Fever in 2005. It took 18 months for me to be diagnosed with ME/ CFS. It is the reason I am infertile and have gone through an early menopause (Premature Ovarian Insufficiency/ POI is its official name), which, in turn is one of the reasons I had a mental breakdown four years ago and started to take anti-depressants.
Sounds fun doesn’t it?
So, when I’m asked ridiculous questions about whether I can walk ten minutes without sitting down, the answer is nigh on impossible to give because of the nature of the illnesses I am suffering with. Yes, on a good day I can walk ten minutes without sitting down. On a good day I can walk two hours without sitting down, I can go swimming, I can chase my nephew around a park, but how it affects me afterwards is not so easy to predict. The likelihood is I will be wiped out from over-exerting myself and need to rest or sleep. There is no cure for ME, no treatments I can have; it’s a case of pacing myself and trying to look after myself as best I can and that’s it. It has been debated in Westminster this week in fact. Not all of us who are classed as disabled look ill. We don't all fit into a perfect 'disabled' mold. In hindsight perhaps I should have hammed it up at my assessment and walked with an exaggerated limp, or better yet, dragged myself across the floor with my one good arm, wearing an eye patch and a nightie, dragging my lifeless, gammy leg behind me? There’s no reason for the eye patch, of course, it just adds a touch of je ne sais quois to my performance, because I’m beginning to realise a performance would probably have got me farther than being honest.
Finally, let me explain a little about mental illness and anxiety. In your report you say that ‘you currently receive no psychiatric input’. No, at present I do not. Do you know why? Because I’ve been on a waiting list since early December 2017. I take 40mg of Citalopram everyday and have done for four years now. Without them, the anxiety I live with on a daily basis would be unbearable. As it is, I am only just keeping my head above water. Just because I present as an articulate, educated, nicely dressed and eloquent person does not mean I am not struggling physically, mentally and emotionally. At this moment in time I am suicidal. I struggle to leave my house unless it is absolutely necessary. I panic at the thought of going to a supermarket or running into anyone I know in case I am required to start a conversation. My GP is aware, as are the local mental health team, who have called me several times to reassure me that I will be seen soon and to hang on a little longer.
Shall I tell you who else is aware? The lady who interviewed me at my assessment. She was aware because I told her. I applied to PIP for help because I cannot cope and everyday life is too much for me at this moment in time. The lady was totally, completely aware that my mental health is at its lowest right now, so why do you assume that because I present well and am articulate that I am not suffering and in need of this financial help? I can confidently assure you that habitual physical and creeping mental illness, crippling fatigue, the impecunious manner in which I am forced to live and a general pervasive feeling of hopeless melancholy has had its tole.
Do not presume Mr Bleep Bleep, to make decisions about my mental health and how my illnesses affect me when you sit in an office of indeterminate location, never having met me in person, with only a transcript of what was a very harrowing interview, facilitated by a middle-man. Or in this case a middle-lady. You use the term ‘I have decided’ frequently throughout your letter; you ‘have decided’, based upon me not yet receiving psychiatric input, based upon me presenting as an articulate individual to the assessor and having no specialist input or medication for ME, that I am ineligible for this financial help I so desperately need. PIP would have made all the difference to my living situation; it would have been a life safer, which I cannot stress enough. Thanks to your narrow-minded decision I can now go about my day to day life perfectly well and happy, knowing that you ‘have decided’ for me. Thank you for curing me Mr Bleep Bleep, and for judging me most thoroughly.
I am cured. Hallelujah and Mazel Tov to me.
One appalled, humiliated and poverty stricken