I'm not a criminal.....

I think we can & do contribute A LOT to society... there is great value in presence and conversation, and in encouraging one another.

The problem isn't that we aren't valuable; the problem is we're not well enough to bring home a paycheck. So we are prisoners inside our bodies as we're not able to contribute the way society requires. And so fingers are pointed at us by certain family members and  certain friends - accusing us with the crime of laziness rather than compassionately coming alongside of us as we face this lot life has given us. May we have the courage to remove the negative voices in our lives, and may we be blessed with friends who believe and support us.    

I have been experiencing and thinking about this.  I think a very capitalist society only values you in terms of how much money you can make.  Therefore, if you can't make any money, you are worthless.  Since my illness and my attempts to get help, I see others that are worse off than me and just going under.   People are burning alive out there.  There is a lie behind the American idea that everyone can achieve.  If you believe in that, therefore if you are not achieving it is your own fault and you don't deserve any sympathy.

What a good poster. Friends and family have no idea what it is like even if I tell them I think they think i am making it up, my one and only friend who understood died last October. Other friends just sneer or dismiss it etc.

Indeed no criminal. I suffered ten years of appalling ME and much of ten years making a reasonable recovery.

I would bring to attention a further aspect of a society that adds cruelty to all 'invisible' ailments. Our western Society is dominated scientific philosophy. Essentially ' If it cannot be measured it does not exist'. It is absurd for few hold that happiness, pleasure, or information  ( to name only three) do not exist. Yet the empirical evidence of hundreds of thousands of CFS/ME sufferers is ignored because there is no scientific test to prove the existance of the ailment. 

Until our society's philosophy is broadened to accept empirical evidence life will continue to be unnecessarily hard on those suffering from 'invisible' deseases.

What we need is a clinical marker for this illness, which has been on the way and 'just around the corner' for a while..Once we have it, and it filters through to the GPs it will get accepted. Other dieases have gone exactly this way, from some cancer forms, if I am correctly informed, to MS and many others. Have faith, it'll come. Meanwhile, a rant now and again helps ;-)

l dont really want to get into polatics about it, but disagree that selfishness or callousness is just down to one political system, l think it can be found in all systems, on the whole western affluent society offers more help to people than poorer society,s. where often ill or disabled people get little help financially or practically, often resorting to begging to survive, whilst the look after all communism could be quite ruthless to non workers, as some societies still are, with no services to back up at all, there are many countries where life with illness disability far worse.

After saying all that l think its easy to shift all blame and attitude to the society of whatever type, surely individuals have choice to support others or befriend them. But society in uk at least has become more divided than when l grew up in the 50s, few divorced, and had family living nearby, along with neighbours who all knew each other and often visited, or shared communal activities, whether parents playing rounders in field with kids, communal walks picnics, parents taking several neighbours kids to cinema, coach trips, neighbours having card games, l,m sure l,d been in every neighbours house as a kid, went to shop for olders or those ill when needed, parents would do repairs or bake, weed gardens, even do hair for older or  ill neighbours. most went for tea visits.  Even up to my sons being small we still did coffee mornings at neighbours. Now many dont know many of their neighbour for visits, just an hello in passing  l think there is more self in families, neighbours, communities, but also think people are not as relaxed and comfortable with each other, as many are not thoughtles and selfish but feel uncomfortable approaching people, l can be also. Plus those  who need practical help or phycalogical support dont ask for it, we also feel uncomfortable and try to keep pride and manage. But often your first port of call is the doctors, and for illness,s like cfs more so than cancer, because its not considered terminal, there is often a casual dismissive response by some gps.  lve found my gps show no interest in my personal circumstances, how l manage at home with practicals, even how l get to and from gps, hospitals, if you say you cant do early morning appt, its often looked on as the `lazy` lot, reality is, for me, l can barely function on waking, will power to get up dressed, become mobile enough to do essentials. l do manage with a struggle, though house not as clean as l,d like, l wonder in summer about gardening hedge cutting back, today notice curtain rail pulling away, now a major job, bit at a time and everything takes 2o ten times longer, think it would take 2 wks to paint a room, used to be 2days,  but l manage, glad for delivery services, re heavy things supermarket, chemist, so get by, but if small family and most gone, dead or away to other area, same with old friends, it can get lonely, guess l,m lucky l can get out a bit.  l just hope those who cant or are bedfast often do get offered more help.  l do think gps could do more, even if only asking about circumstances and referring people to agencies that can offer practical help or social. Its possible with some illness, s such as cancer or ms others they might, l dont know, l think  many do have a casual attitude to cfs, But even with cfs people have different circumstances, some have supportive partners, that means a lot practically and emotionally, some have large families, bros sisters aunt uncles, or old friends still on the scene, others havent, l do have 2 sons but ones a distance away, see him twice a year, other nearer, but busy life, see occassionally. l,m glad of my pets, my happy funny little dog, computer for email contacts. l hope we can all keep posative and live with hope, for advances in medical. 

l,m a champion soap box ranter, so your not on your own Rose.

I was shocked that my local hospital department that supposedly is the go to place for ME, refused to switch my appointment from am to pm.  And these are people who claim they understand ME.

I think this kind of attitude has been engineered by and for political purposes and agendas. The govt supporting newspapers put a biassed slant on the stories they run to get people fired up, get their goat. Large families in large,expensive homes on benefits are perfectly capable of work, silly bimbo's on benefits getting NHS plastic surgery, disabled man on benefits spotted sky-diving, women on 40k claimed housing benefit etc. Isn't it outragous that we pay our taxes to support

'people like them?' They follow on with more stories; drip, drip, drip.  The

economy is failing, everyone is struggling, living standards are falling despite our

hard work; drip, drip ... Story after story and people accept the rhetoric as truth.

In the end it becomes socially unacceptable to be out of work for whatever reason. It makes me angry when i hear people compain about paying their taxes for lazy scroungers to live off. I have paid taxes and NI all my adult life and the only reason I don't now is because i am no longer earning enough for that privilage.

I tell as few people as I need to about my cfs because truthfully it's quite embarracing sometimes. But why should we feel ashamed?  It's the people who

demonize and discriminate who should hang their heads in shame.

I think your poster is great!

 

Hi Rose,

Thankyou for you're recent poster. No its not a crime to be ill. I used one of your other pictures on a micro teach I did recently. I did a short evening course at the local college in teaching and training. It ofcourse exhausted me! But, I managed to muddle my way to the end and had a PowerPoint presentation to do. I did it on cfs/me. The equipment let me down slightly though I carried on. What was refreshing was that several people afterwards came over to talk to me about the condition as well as about my own experience. I think the slides not going according to plan was actually beneficial : ) so, at least a few more people know a little bit more about how ghastly it can be with this condition. And I'd like you to know that I credited your picture with your name and stated you were on this forum and had said I could use your work.

Best wishes

Beverley