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.