Sometimes I run out of words to describe the world I live in. Words have failed me for quite a long time now so I thought it might be good to pop in and say hello. After all, the New Year is more than one month old and I have to start living in it somehow. This I find harder with each passing year as a chronically ill person, and by the look of things a so-called normal life remains the stuff of daydreams. Meantime, in the real world, people are dying like flies due to medical and political neglect and a far right-wing think tank in the UK has suggested the sick and disabled be pushed down the social ladder a few more rungs, ideally to pavement level where disgruntled citizens will have the opportunity to set fire to their tents and cardboard boxes*. For even if there were jobs and even if someone with, say, progressive MS could flit about in a supermarket or shoe shop, employers will not, I repeat, will not employ a chronically ill person.
Against the backdrop of this unsavoury mixture of neoliberal Dickensian-inspired reality, I have been grappling with Issues of Loss. Each morning, when I wake up, I feel a kick in my system, not just the proverbial teeth and gut. My losses carry names such as Joakim, Linda, Johanna, Mia, Georgie, Lucy, Nadine, Chris, Sophie, Simon, Ida, Petra, Julia, Caroline, Susanna, Tobias, oh, the gallery of faces is seemingly infinite because I have been able to add a face to it every week or month over the past five years. These faces belong to people, who, not so long ago would call me their favourite colleague, gossip, friend, aunt. So I find myself crying a lot, not only because these losses cause me both emotional and physical pain but because I am fully aware I will not easily come to terms with these losses. They are on-going until the day I have added the very last face to my Gallery of Loss.
At this rate, it will happen sooner than later as there are not many people left at all now from the life I lead prior to what I refer to my final, it seems, relapse in summer 2011, which is when I gave up pretending I was healthy. It was not a choice, as my body made that decision for me. I cannot help wondering what the turnout at my funeral would be today as compared to, say, 2009. I think there would be a difference of about one hundred people (I’m basing this estimate on the fact of 120 happily singing, drinking and dancing guests at my PhD celebration) in other words, I would not at all manage to entice an impressive number of people to gravitate towards my final party. I know, this is a morbid way to think about one’s life but it is my life and my pain. This morning I was asked by a well-meaning Twitter friend if it is helpful for me to be able to connect with my real-life friends on social media and after a few minutes’ hesitation I put it out there: there are no friends left to connect with. I have come out of the closet now as Friendless, Lonely, and almost completely isolated.
This blog post is not a great (belated) start to the new year but what could be expected of a year that not even two weeks old shocked me with the death of David Bowie? As Suzanne Moore had expressed it so well, there are people who thought he would live forever and I was one of them. Of course I knew that it could not be so but I still assumed that David Bowie was the one person on Earth to outwit death. He certainly succeeded a few times.
To return to my bleak personal musings, I would like to emphasise that the isolation I experience I do not experience alone as hundreds of thousands of people find themselves in similar situations. I would also like to point out that these deplorable situations are artificially constructed by power elites, and before anyone accuses me of being dramatic I recommend they read up on the history of myalgic encephalomyelitis.
To be more precise I would like to address the poverty into which chronically ill people are forced. This poverty is a social and political construct that is entirely unnecessary but very ill people, many of them women with chronic illnesses, are rendered brutally vulnerable and exposed to their partners’ goodwill to pay for their upkeep. I am talking about chronic illness that leaves people so ill they become home- or, in some cases, even bedbound. In Great Britain, new statistics show that 13,900 people so far have lost their Motability, that is the Department of Work and Pensions has seen fit to strip people of their means to get about, which will lead to more poverty. In Sweden, a sick pension (sjukersättning) is income-based and calculated on the five years of income preceding the illness. As many of the severely ill will have been on sick leave first, with drastically lowered incomes, their income based sick pension does not reflect what they earned when they were in full employment. Many end up living on as little as £550 per month before tax (for those of you who understand Swedish, I strongly recommend this blog post by @argaklara, http://argaklara.com/2016/02/sjukersattning-ar-omojligt/). It is possible to apply for housing benefits and other expenses but remains a gamble whether or not a person will receive the financial help required to lead life with an ounce of dignity. Many are stripped of all dignity, go hungry, without the medicine they need and in ever increasing isolation. In Great Britain and most other countries I am familiar with, the stories are pretty similar.
There is no dignity; there is no humanity in being chronically ill. There is, as already hinted, a gender aspect to this as chronic illness, especially autoimmune illnesses, genetically affects more women than men. As women, on average, earn less than men, there is already a built-in disadvantage. In addition, studies have shown that the medical profession is gender biased when it comes to diagnosing men and women. Women wait longer than men for a diagnosis and there is a difference in perception of female and male patients. Women are more likely to be prescribed anti-depressants when presenting with symptoms such as persistent headaches and fatigue, whereas men are given the benefit of the doubt. Social class, ethnicity, age and education background also play a role when it comes to diagnosing, however, many of my women PhD friends (I do have friends who are chronically ill as opposed to the initially mentioned healthy ones who’ve vanished) have been at the receiving end of condescension and ignorance on the part of family doctors and consultants.
My handball training stood me in good stead once when I managed to catch a packet of SSRIs suddenly thrown at me across the vastness of an oak desk by a little GP man who had not met me before but who with certainty in his voice and demeanour pronounced me to be a Personality Type A, a terrible overachiever who loves to overthink everything, and therefore needed calming down. He also held up a shakily drawn circle divided into three ‘cake slices’, as he had pedagogically put it; one slice symbolised work, the other family and the third spare time. I was interrogated on how much time I thought I spent on each of them which baffled me as I had just patiently explained I was too exhausted to spend any time on leisure or family and that in order to keep working I needed to sleep the whole time I was away from work. I caught the somewhat squashed packet SSRIs whirring towards me with my right hand on sheer instinct, was momentarily pleased with my long forgotten skills, and then equally keen on beating a hasty retreat, vowing never to see the grotesque little man again. My PhD was worth less than nothing, in fact, I had the impression the good doctor was riled by it.
We live in punitive systems. There is nothing glamorous or enviable about being too ill to work. The alternative, alas, is not to be a good human being as in not hurting others and going peacefully about one’s own business. Unless we work, and ideally work in high-paid positions, we do not count for much; instead, we become easy prey for think tanks and callous government measures. Sadly, there are academic cliques who have been colluding in this social and political construct of cumulative misery. Since the day I was branded a personality type A by a perfect stranger behind a very wide oak desk, one bizarre diagnosis after another has been thought up for thousands of desperately ill people: conversion disorder must be one of the most hateful among them. The U.K. Media in particular has not been impressive. On the contrary, just how interlinked certain academic circles and the media are becomes obvious on closer scrutiny.
As far as my personal losses are concerned I would like to say to each one of them
You have not only let me down but my children, too. When they needed the familiar laughter and the stability of your presence the most, you decided it was a good idea not to be in touch anymore. You were not only my friends, you provided what is called social cohesion for my husband and children; a sense of belonging, being part of a caring community. The caring stopped after about two years when people could no longer fathom that any illness should take this long. Instead of pushing through your own prejudice and lack of knowledge, you chose to believe others would probably be there for me but it was time for you, personally, to move on, after all, that’s what people do. What you really did was to deny me your support; my academic friends and colleagues were very much needed for awareness raising and campaigning. There are genuinely nasty people and colleagues out there who must be told off, intelligently, convincingly. I’m too ill to do that effectively, my body cannot do the circuit of lecture halls and seminar rooms where I could give talks about disability and chronic illness. I cannot present my analyses with a firm hand and proceed to mingle with influential scientists, journalists and politicians. See? You, on the other hand, could do all that rather easily. We could have sat in my house and discussed strategies. We could have met inside my new reality and you could have said ‘I want to learn something new anyway’ and I would have been eternally grateful and my kids would have heard their mother laugh and could have been safe in the knowledge not all is lost when a parent falls ill and is forced to leave their old life behind. Perhaps you realise now that my moaning about losses doesn’t pertain to you stripping me of the occasional drink or boozy dinner party.
Our lost friends contribute actively, whether they like it or not, to a social climate of despair. While we are directly affected by our chronic illnesses and deal with them as best as we can, our friends and relatives are affected by them too but far too many of them choose not to be (as always, there are remarkable exceptions), thereby making it possible for hostile journalists, medics and politicians to hurl abuse at us. In fact, not only do they make it possible, they positively engage in similar behaviour or take what is written about us at face value and use it to justify their abandoning us in the first place (I couldn’t stand it anymore, why wouldn’t she just snap out of it and return to work). Why indeed.
Despite the relative verbosity of this blog post, words fail me as I do not understand the fundamental requirements of abandoning someone, or, to put it more colloquially, of throwing a favourite friend, aunt, colleague etc. under a bus driven by neoliberal, state hating capitalists, scientifically untalented but powerful psychiatrists, indifferent consultants, power-hungry media hounds who’ll chew at any juicy bone thrown to them, and others who think nothing of abusing the sick and disabled.
Amidst all that, I am greeted on social media by naive comments such as ‘vocal protests worry me, I get a sinking feeling’ when someone in a powerful position actually does speak up for the hundreds of thousands of abandoned people affected by a chronic illness. There are people who still think that appeasing bullies is a helpful, pragmatic way forward. I am a pragmatist at heart and passionate about collective learning processes, but appeasing abusive power elites has never worked as history has shown repeatedly.
*It is notable they don’t consider it possible for someone to be too ill to work, apparently a lack of incentive is the only issue.
1 http://www.reform.uk/ (Accessed 05 February 2016)
3 http://www.occupycfs.com/2015/05/08/the-burial-of-me/ (Accessed 05 February 2016)4
4 http://www.bbc.co.uk/news/uk-35476904 (Accessed 05 February 2016)
5 https://jcoynester.wordpress.com/ (Accessed 05 February 2016)