12th May, how I dread this day, or: Awareness and compassion fatigue

Further disability cuts are on the way in the UK, as per announcement. Workfare instead of Welfare still sounds reasonable to the ordinary, able-bodied, so called hard-working citizen who has no experience of disability or chronic disease and who is fortunate enough to bumble along in a bubble of delicious, wonderful humdrum life consisting of office gossip. work lunches, decisions as to whether to buy a new car this or next year, and move to a nicer area as well as annual family holidays and expired yoga passes that need a top up.

No amount of awareness raising for a chronic, debilitating disease will poke holes in those lovely bubbles of normality. Maybe it is human nature, after all, compassion fatigue is an ailment of our times. Compassion fatigue is the underbelly of too much information about too many miserable conditions, humanitarian crises and natural disasters scourging societies. People who spend little or no time on Facebook, Twitter and other social media outlets are reported to be happier than those who do. Scientific evidence to back this up is scant, but there are some studies making such claims, and I am inclined to believe them. For the able-bodied and actively participating people, a stint to Facebook or Twitter is an amusing pastime, a couple of minutes here, half an hour there to reconnect with an old friend and to like a cute picture of cats tapping away at a computer keyboard or hilarious video clips of Alanis Morissette’s remake of ‘Ironic’.

A few years ago, when more and more sick and disabled Facebook users started to post updates about their health, medical treatments and, in some cases, politically coloured messages to their timelines, many of those in the normality bubbles defriended or simply unfollowed (which is more merciful) the ‘misery porn’, as it is often referred to. Too much negativity, too much unsavoury information about people’s bowel movements, and definitely too many pale faces staring with sad, hopeless eyes at the rest of the world from underneath crumpled duvets, all in the hopes to raise Awareness. As a severely ill person myself, I understand these pictures as a form of self-expression or even serious attempts to do something, anything, about the abysmal situation. For those who long since plunged to the ground from inside those bubbles of normality, for those who have lost nearly everything, including their homes, husbands, wives, children, relatives and friends, in other words, for those who no longer feel safe in a network of human relations, there is not much else to resort to but the Internet and forums in which hope and comfort are on offer. People have every right to express themselves in whichever way they can and feel, provided they observe some fundamental rules of decency.

But can they hope to raise awareness outside the circle of equally sick and disabled people? If I suffer compassion fatigue, if I sigh at the sight of other people’s choice of bed linen and untidy bedrooms or half empty tea mugs on sticky surfaces (scenarios I fully understand) what must the average healthy person think of such pictures? What do these pictures convey to someone who has no idea about a specific illness ? My educated guess is they confirm misinformed and misguided stereotypes. Imagine someone who does not ‘believe in ME’ seeing image after image of people who look, to the ignorant eye, lazy, sleepy and generally weary of life. Would that heal the disengaged person of their ignorance? Of course, an ME sufferer cannot win on that score, post a picture of yourself looking even vaguely cheerful or heaven forfend, out and about doing something ‘normal’, and you’re likely to receive comments along the lines of ‘You look fine to me’, and may risk being reported to the authorities as a benefit scrounger.

What else is there to be done? What can desperately ill people hope to do in order to be heard from the depths of their messy bedrooms and from underneath their bedding to which they are condemned by too little to none research funding and by too much hateful drivel about the ‘reasons’ behind further benefit cuts? There is enough knowledge and scientific evidence to end the cruelties and neglect today. There is enough money for governments not to steal the last of what can vaguely be described as social security from the sick and disabled.

12th May is Awareness Day for Chronic Diseases such as myalgic encephalomyelitis. If, against all odds, anyone in a bubble of normality reads this and if you, having read this, see a picture of a pale face with pleading eyes haunting you on Facebook, do try to muster empathy, try to grasp the essence of those images and status updates. Try to make this day memorable for someone who needs you to listen and to act on their behalf. It would lend this day meaning to someone whose genes and immune system are not as good as yours.

Thank you from the genetically challenged people behind Utting Wolff Spouts

 

Please click on these links to find out more about 12th May activities and donate to biomedical research, thank you.

http://millionsmissing.meaction.net/

https://secure.thebiggive.org.uk/charity/view/6239

http://www.rme.nu/

https://www.change.org/p/hermann-gr%C3%B6he-bundesminister-f%C3%BCr-gesundheit-bmg-wir-wollen-unser-leben-zur%C3%BCck

https://petities.nl/petitions/me-is-geen-solk-wijzig-gezondheidsraadscommissie-en-houd-u-aan-de-adviesopdracht?locale=nl

 

9 thoughts on “12th May, how I dread this day, or: Awareness and compassion fatigue

  1. Sunshinebright

    I can understand the “compassion fatigue” that many “normal” and “healthy” people out there may be suffering from. It is not possible for the “fortunates” to comprehend the moment to moment, day to day, week to week, and year to year plodding through those continuous times that patients with chronic illnesses have to wade through as best they can.

    My daughter is home bound with ME, and is doing her best to take whatever enjoyment she can out of every day. And, there are those of my friends and acquaintances that, no matter how many times I try to explain that she has a progressive, chronic illness, they still say, “I hope she is feeling better.” I know they mean well because they don’t know what else to say. I have to bite my tongue or else I will let out a tongue-lashing at them out of frustration. It’s more than I can bear to hear my daughter tell me about her symptoms that seem to change and/or get worse every day.

    I listen because there’s no one else to listen.

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    1. Utting Wolff Post author

      Thanks for your comment. I cannot count the times I had (subjectively perceived) genuinely good conversations in which I strongly felt some of what I explained made a lasting impression. The most recent conversation of this kind was concluded with “Ah, well, anyway, I hope you feel better soon.” I am slowly giving up my belief in informal education (I am an education researcher with a passion for issues pertaining to lifelong and informal learning and participation issues). It never seems to sink in, which is why we must demand political change. But It is hard, or nigh on impossible, to demand anything when home- and bedbound, which calls into question the whole concept of ‘citizenship’. My very best wishes to you and your daughter.

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  2. mrspoonseeker

    You certainly need to grit your teeth sometimes to put energy into ME awareness posts, tweets etc when you know they’re going to be read mainly by fellow patients rather than the well majority who really need to see them. The incentive for such people to walk in our shoes, see through our eyes, and – let’s face it – lie in our beds is minimal. Humans are pretty bad at really empathising with other people at the best of times and to try to imagine what it’s like to be chronically sick…. it’s not an attractive prospect. So it’s convenient for people that the PACE researchers and their friends in the media have provided the apparent excuse that we’re not really ill – well, not properly ill – after all. I’m not sure how many people really believe that lie but a lot of them probably believe it enough to turn their attention to something else instead of an ME blog post. I have a FB account which I mainly use to communicate with friends who don’t have ME. When I occasionally post about ME there, I tend to get minimal response. I often wonder exactly why. Yesterday’s ME awareness post did rather better than usual, perhaps because I wrote the link to my blog post in a light-hearted way. Or maybe they thought that they should make the effort this one day out of 365. Either way, I’m grateful to those who took the time and trouble to read the post. I suppose for now we have to get the truth out there one person at a time, until eventually we reach a tipping point and the wall of incomprehension comes crashing down. It’ll happen one day.

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  3. ravenswyrd1

    Reblogged this on Ramblings of a Fibro Fogged Mind and commented:
    Another 12th of May missed by me, i just dont have the energy to be WCA fit and have any kind of a life. Being found fit doesnt mean you are and the more i take on the more fit, folk think i am. That couldnt be further from the truth of pain and confusion led tiredness… just keeping it together by will alone… shareing this blog as a stab at compensation as its such a good article… take care folks… Dxxx

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  4. Fibro confused

    Cracking blog post, makes perfect sense to me but then I’m one of the under the bed clothes Fibro types, I like so many spend a lot of time on Facebook and use twitter to push out info and campaigns. We do spend a lot of time circulating things among ourselves it’s where we feel safe, the rhetoric fed to the general public has made our world even smaller, it feels almost wrong to have a good day, do a little gardening, the fact that it’s done sitting down with special tools makes no difference to the able bodied unaware, I must be ok then if I can go outside and potter about. No one see’s the resulting exhaustion but we must keep trying to make people aware, even if it is just one person at a time. It’s a war not with bullets or bombs but nonetheless if we don’t fight our families, the next generation will have no security no free at point of use health service. I’m fighting for my daughter and nephews, there’s every likelihood she has inherited my illnesses I don’t want her to suffer what we are suffering. xx

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  5. Anja Olergård

    I don’t know whether to blame my genes for being too tired to read more than the first (two??) paragraphs, but thanks anyway for writing. I had May 12th depression: I’m still sick, many people are being mistreated and laughed at by doctors, we are poor, often fat, and our wit has left us with a questionable “charm” that we fear will evaporate ere long. And a paid stranger comes to give me a bath twice a week or I would stay dirty. Maybe next year, we’ll be well. Next year, or the next, or any year soon? Please?

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