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[1]*. 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[2], 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[3].
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[4], 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[5] 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.
References
1 http://www.reform.uk/ (Accessed 05 February 2016)
2 http://www.theguardian.com/commentisfree/2016/jan/13/dont-deride-those-mourning-david-bowie-this-grief-serious-and-rational (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)
Utting-Wolff Spouts 
Reblogged this on Short Blogs for the Distracted……… and commented:
Such a familiar situation we sick find ourselves left and neglected… great blog as ever ..
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Thank you, Chris, it’s been a long time but I have been stuck for words about almost everything, and too ill. I hope life is treating you kindly. You are in my thoughts.
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It is good that you linked to the Reform publication. I found it yesterday while eating lunch in a café. One quick look confirmed some fears of the past few months: that all I had seen about sanctions, benefit reductions, abolition of separate groups for the very severely ill, and sanctions and their conditionality, would be combined and served up for legislation by politicians.
Pretty awful stuff, a harmful Nudge along a bad dimension. Note that all this has a background that, I think, should be better known. As far as I have seen, many of the ideas appeared in a Green Paper prepared for the 2007 Welfare Reform (including ways to “bypass” GPs in the health assessment process for ESA that became the harmful WCA). They were partly adopted in a publication by the Conservative – Liberal Democrat government in 2010: the DWP document “Universal Credit: welfare that works.” The instrument of In – Work conditionality appears in a box of Chapter 3. It seems that bypassing GPs was proposed quite recently, I guess based on that Green Paper. The contemporary intellectual origins of much of this are the works by Lawrence Mead, an American Libertarian associated with right wing think tanks and academia. But of course, keeping the unworthy poor poor and forcing them to work for crap wages in crap conditions, is an old idea.
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Ignoring GPs has been common practice in Sweden for ages. It’s a gamble if anyone reads your doctor’s notes and takes them seriously. We’re all on a slippery slope and the sooner our healthy friends realise it, the better for the common good. No one is exempt. No one, which is why I despair to the extent I do. So much more is at stake than my own life and personal happiness. I want people to understand this.
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Right, I’ve gone through a lot of GPs here. I tend to leave as soon as it is clear that one does not at all care about me as a person. “Have you read my Journal,” is my first question. The British stuff will formalise practice.
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Same here, I don’t bother anymore, there’s not point in showing respect were none is given. There is no point in being reasonable where ignorance reigns.
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Thank you for speaking so eloquently on behalf of us all and expressing our shared anger and dismay at the continuing degradation of the disabled in the UK.
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Susan, thank you for reading and responding. It’s good to know we’re not alone in our loneliness. Sadly, fundamental change seems so very far away in the current political and social climate. x
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This has clarified every thought, feeling and response I’ve been experiencing for months now but been too ill to verbalise. After 25 years I didn’t think it was possible to feel any more despairing but I was wrong and I’m absolutely petrified.
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I wish I could have written a cheerier post, I’d hate to think I made you feel even worse. As I said to someone else on Twitter, at least we’re all sitting in the same rickety boat, in solidarity and friendship, even if we’re not the friends and people we once thought we’d have in our lives. It’d be good if there were ways in which we could meet up in real life but what abusive medics, journalists etc don’t seem to understand is that we are too ill to do do even that. Still, there is strength in numbers. We may be isolated but we’re not alone in our experience of isolation. All the best to you.
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Ah, Claudia – thank you for articulating so well this sense of deep loss and betrayal – the “social climate of despair”. I send you a big, over-the-Internet hug. I do hope that over the years you have found even just one or two friends who “get” the reality of ME. It is a cliche that illness lets you find out who your real friends are, but it is a true one.
I sometimes think back to the days over 30 years ago, when I was well and very active, and wonder whether, hand on heart, I would have reacted any better than those in your sad roll-call. The answer is, I truly hope so, but in all honesty can’t be sure. Though I have always been someone who hated injustice, I think my “fit” self would have struggled to understand the true, horrible reality of a desperately debilitating illness. And nowadays, the social and political climate is so very much worse than then, so brutal, as you put so well –
“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”
– that some of those who should have been supportive, have instead been too influenced by the harsh and unforgiving ethos of these current times.
Lastly – as you say: “appeasing abusive power elites has never worked as history has shown repeatedly” so yes, let’s hear it for those who are ruffling some considerable amount of establishment feathers and sticking up for us. My grateful thanks.
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In an older post I raised exactly this question (I think it’s under Academia and Dis/ability). Would I have been better? We would all like to think we’d be nobler, better, more caring. I try to be understanding, I know life is busy, hectic even, we’re really not the only ones with problems, but ours are a tad more pressing, a tad more urgent and even life-threating than, say, a healthy friend’s broken down car or marriage. Our cars and marriages break down, too, under a huge stinking pile of chronic illness that no one cares about. Maybe I would have been better, maybe not, I’ll never know but I do know that I’m better and more caring now and that I am not a friend of flimsy excuses. I’m not trying to be hard on people, but facts are facts: they’ve gone. Yes, luckily, there are (new/er) friends in the picture and I value them dearly. Thank you so much for taking the time to write such a kind and thoughtful comment.
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Thanks for this, thanks for being open about it and making me feel like it is not just me.
I lost all my friends except for one (who is a treasure) because of this illness. Friends I myself had dug out of many long hard problems over the years, and when I needed help – gone, vanished. Like you, I struggle to understand it. Society worries me now, people don’t care about each other, about those worse off than them. I have to remind myself this is not quite true. Most ppl don’t care about other ppl but a small number are decent, and must be treasured.
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Thank you for your comment. So many things needed to be said although they are so very hard to articulate. But I though it might, paradoxically almost, break the isolation I suspected many must be feeling, too, just a little bit. We are in the business of shaming ourselves as we think we are undeserving of having friends, but I’ve come to the conclusion that’s evidently the way things are. For this reason, I wholeheartedly agree, the few who do stay are shining gems with the power to save lives even. All the best to you.
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Please, please never think you are undeserving of friends – and this goes to anyone else who has read and been affected by Claudia’s blog. No-one asks to be ill, and as we know all too well, the double whammy of having a disease cursed with the most dubious politics, ignorance and misinformation can be too much to bear at times.
I suspect that people like yourself, Claudia, all those who dilligently blog and tweet and share information and support over the internet, despite the physical and cognitive cost to yourselves, perhaps underestimate just what an incredible offering you give to so many others. So, a very big thank you to you all. The flaky friends from your “other” lives don’t realise what gems they have lost; more fools them.
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Clark – I am so sorry to read that you have been let down so badly by the very friends you helped so much in the past. Thank you so much for continuing to contribute so much to others suffering from ME, with your excellent blog which I have only recently discovered.
The state of society worries me a lot too; the Tories’ austerity driven agenda of hate, demonisation and division has been very successful in providing scapegoats – the chronically sick and disabled, the unemployed, asylum seekers and so on. But I guess we have to take heart in the knowledge that there are many people out there who are opposing the injustices. Easier said than done, I know all too well, when you are ill all the time. Take care of yourself.
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Thank you so much and please accept my sincere apologies for replying so late. I had no notification of your wonderful and kind comments. My warmest wishes to you.
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Så många känslor. Sorg, när jag inser att jag inte heller har några vänner. Sorg, när jag inte ens vågar skriva min kommentar på engelska, jag som lärde mig engelska (i Sverige) när jag var sex år och har en magisterexamen i engelsk litteratur. Sorg, när jag inser att jag var den som inte förstod reglerna på gårdagskvällens familjespel, att jag var den alla fick vänta på i snart sett varje runda, att jag inte förstår hälften av vad de säger. Sorg, när jag tänker på alla ord i din text som är akademiska, intelligenta, specifika, synonymer. Och att mitt ordförråd knappt längre rymmer trestavigt. Sorg, för att sjukdomen drabbade mig innan jag kunde doktorera. Ibland gick jag in på engelskainstitutionen och snodde informationsblad, just because. Rädsla, för även om rituximab fungerar på mig är jag en medelålders kvinna som inte minns nåt, fattar nåt, kan nåt, eller har jobbat på närmare 20 år. Rädsla, för att min sjukersättning varje år hamnar längre bort från vad som behövs för ett normalt liv. Om fem år kanske den har höjts med sammanlagt 350:-, medan mina jämnåriga friska har fått många tusenlappar mer. Och de hade redan så himla mycket pengar till att börja med. Förvåning, för att det kändes helt normalt att gå in på apoteket igår och köpa två mediciner, minnas att jag har typ en femtiolapp på kontot, och be min man betala, utan att skämmas för att farmaceuten hörde att jag inte kan köpa mina egna mediciner. Lycklig, för att min man ska komma hem med pizza. Ledsen, för att take out är det närmaste jag kan komma världen därute. Tacksam, för att du skriver så bra. Ont, i själen, för dig, för mig, för så många.
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Kära Anja, jag ska skicka ett utförligt svar till dig. Vill du skicka din mailadress till mig? claudiagillberg@gmail.com Sänder en stor styrkekram under tiden. Ta hand om dig och tack för din fina, sorgliga och djupt insatta respons här.
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“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.”
This reminds me of best book on chronic illness that I’ve ever read, entitled “When the Body Says No”, by Gabor Mate M.D.. He mentions ME/CFS and fibromyalgia only in passing, but concentrates instead on other chronic illnesses like cancer, MS, ALS, Crohn’s, etc.
Our bodies have been shouting ‘no’ at us for years, sometimes decades. Why do we ignore these calls for attention? I think you’d find the book eye-opening and empowering.
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Karen, thank you so much for your comment. I am in the midst of a major research project (Chronic illness and organisational learning) and much of my empirical data indicates that we ignore our illnesses because we are not presented with viable options. Personally, I would not have gone on the way I did if a knowledgeable, competent GP or consultant had advised against it but the opposite was the case, they urged me on (of course clearly not believing I was ill despite very strong evidence to the contrary). I felt increasingly embarrassed about my ill body whose failings had no name, and worse, were regarded as social constructs or psychosomatic experiences. When we don’t have solid diagnoses we live in total uncertainty, we cannot name what is wrong with us, therefore people, colleagues, friends and family think we are awkward (and worse). Employers place focus on rehabilitation. My research has not come up with much else on employers’ part than rehabilitation in the case of chronic illness, in other words, there is no insight and no knowledge about people with incurable illnesses.That means that ‘reasonable accommodation’ becomes rather difficult, there are no official guidelines as to what would constitute reasonable accommodation in the case of chronic illness with fluctuating status. When you cannot participate in any kind of effective or adequate treatment (because there isn’t any) people’s patience soon wears thin. It is incredibly hard to know what to do and where to turn in such a situation. My response to it all was to keep on working, sometimes sleeping under my desk, in my office, with the telephone programmed to ‘I’m away at a conference…’ etc. It was only when I was foaming at the mouth and bleeding from the gut that a neurologist finally put his foot down while a locum still tried to push me into taking SSRI. All of the above is merely a partial explanation, there are many more factors, but as long as we don’t receive safe diagnoses and are refused alternative ways in which to be and participate in society as full citizens, beyond work, we will all just muddle through to the detriment of what is left of our health and lives. The organisational learning has to do with (a lack of) reciprocity. I argue that the concept of Lifelong Learning (and professional/organisational learning are parts of it) must be widened in order to apply to all stakeholders, not just employees but employers, not only to the sick/disabled/social cases etc but policymakers and institutions. This notion that learning is only always for the betterment of the individual ‘receiving/earning’ money through perpetual self-improvement while organisations really do very little in the way of learning about e.g. chronic illness is in itself untenable.
I will try to find Dr. Mate’s book, thank you for the recommendation and all the best to you.
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I’m at a loss for words whenever I think along these lines. I lost a friend who has been in my life for 45 yrs. I have chosen to be graceful about it and not say anything but there are times when I wish I could find a way to tell her that her abandonment is painful to bear.
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When I first read your comment on Facebook and the response you got to it (and I’m certain it was meant in the nicest possible way), Wendy, I thought I wish people stopped making trite comments about an abandoning friend not having been a ‘genuine’ friend. I don’t think that’s true, especially not of someone who’d been a friend for 45 long years as in your case. If that were true (and it isn’t) this would mean everything I – or any of us – have ever had in our lives was not genuine and by that logic invalid. As a last consequence, it is like saying to us that our lives are filled with disingenuous, insincere, vacuous people and events and therefore not worth living. That’s of course nonsense. I know you must have had a brilliant time with your fiend of 45 years and that she must have meant the world to you and vice versa. I wish you could find a way to tell your friend what she has done to you. Theoretically, it shouldn’t be impossible after such a long time, but sadly I know how impossible it seems (or is). We cannot afford another disappointment and heartbreak so we choose to be graceful, as you put it.
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