I was reading a book called confessions of a GP, the book was great and very interesting, until the comment and his thinking around FM/ME/CFS. The doctor was telling stories and this one was a bought a lady with FM/ME/CFS. His words were....in the GP's practice everyone knows the meaning of S.L.S that's the short way of saying Shit Life Syndrome, the doctors use this in the surgeries to each other, this is the words for people with OUR illness's, so many of us have normal live apart from pain and feeling ill, we have kids and husbands, and would be happy if doctors understood us. Reading this made me angry because he was saying that not many doctors believe its and illness and were all just sad. I am sure if the doctors that don't believe in the illness's and were hit with it, would they still its fake illness.
What doctors really think...... - Fibromyalgia Acti...
What doctors really think......
I walked out of a consultation with a Dr who said..."...but isn't that just all in your mind!...."
I then refused to pay and told the receptionist that if he sent me a bill I'd make a formal complaint and sue him!
Thats a disgusting thing and term to use yes we all have our problems in life at diffrent stages but none of us would want to be like this all the time i hope that doctors never suffres from fibro or anyone close to him wonder what his term would be then ?????? love to all Diddle x
cannot agree more i said this to my doc and obviously didnt get reply i am a nice person and would not wish this illness on anybody no matter what they had done.
I read that book a few weeks ago and I was shocked and angry too. He clarified that what he was referring to wasn't that FM/CFS CAUSES our lives to always be shit, but that we developed them BECAUSE we had shit lives (the point being that they are psychological illnesses caused by having horrible lives and they are some kind of attention seeking for sympathy). The cases he referred to were all of people living in poverty, without jobs and with problem families (kids in trouble with the law etc). Nothing could be further from truth in my case. I have had severe Seasonal Affective Disorder for years, I was diagnosed as hypermobile years ago (and most people who develop FM are also hypermobile) and I am also dypraxic (which causes low muscle tone). In spite of this I have a good class honours degree and I am on the Senior Management team of a large junior school. I teach my own class as well, and have responsibility for Health and Safety, First Aid, Educational Visits, Residential visits, English, and Assessment. I do have two afternoons a week off (I went back part time after my daughter was born 8 years ago) but I also run a home, have been happily married for 14 years and my daughter is happy and successful. In NO way was my life shit prior to (or since) diagnosis. I absolutely refuse to give up work and I visit my docs regularly to ensure that the cocktail of meds I take keep my symptoms under sufficient control (although I am in pain every day). The only concession to my illness (and the OA which developed at the same time) is that I no longer teach PE. If I am regarded as having SLS, that is a misdiagnosis. What a sweeping (and inaccurate) generalisation he makes. Think FM charities should put him straight. I think I'll write too.
I understand what he means. I have SLS. Always have had, always will do. If he met me he would have made that diagnosis and other doctors would too. Poor nutrition, poor education, poor home life as a kid, unloved, uncared for and abused and so into married life. unloved, uncared for, and emotionally abused.
Nope I am not feeling sorry for myself. I am being honest. It doesnt mean I have done this to myself, it doesnt mean that I revel in it. it doesnt mean that its all in my head, because it is not. poverty of all kinds can cause it
Ive come acrooss this even my phchologist, suggested Im ill because of my childhood, why I dont know I had a fairly ordinary childhood, brought up in the late 50s 60s no one had what kids get now, the best when I told him off, he was reading my care assessment and told me to give up smoking, Ive never smoked ,he was reading about my hubby, secondly he told me my youngest daughter must have been a mistake there being a gap of 6yrs between her and my youngest son, I told him after 10yrs of trying to get pregnat , upteen miscarriages a stillibrth, she was no bloody mistake, ,I dont know why Im ill, but its real , before I had a good life brought 5 kids up, 4 of them are high achievers a have good jobs, yes Ive had my knock backs but I dont think I can blame all that
No, I also read the book and he basically looked at the woman's life which was pretty bad and put the illness down to that. I was also quite disappointed with his take on it. Clearly he has no true understanding about it and I have the same with my present G.P. who was very quick to say it is not organic. Personally I feel if it is to do with abnormal brain activity then it is organic because the brain is an organic part of us. Certainly none of us would succumb to this if it was imaginary or escapism because it is truly hell on earth to suffer this way. If it was mind over matter then I think most of us would sort ourselves out pronto!
I am lucky that my GP is amazing and supportive. I can't say the same for the Neurologists that I have seen. The first one basically said it was in my head and I should stop taking the medication prescibed to me, even though I hobbled into his room and winced constantly in pain the short time I was in his office. Obviously I complained about how he treated me. I then had to wait 8 months before seeing another one who had a slightly better attitude but basically still dismissive. He did send me for MRI calling me back and saying "Scan was more or less normal if nothing changes in 5 years we might consider a lumbar puncture. There are millions of people the same as you". Basically he knew it was Fibro but would not diagnose it. It took another year after this before I was diagnosed by my amazing GP, what a relief to know what was wrong. I think the medical profession should be ashamed of themselves treating people like this and all because of ignorance and superiorty complexes.
am very lucky to have a sympathetic GP now. we're tweaking my umpteen meds cocktail constantly to try and get it right.
being in constant pain and being dismissed by a supposed healthcare giver is truly the most depressing thing to happen to any patient. It's irresponsible of the medic concerned - how can anyone get better when basically told to shut up and go away?
my dads reaction what funniest [sense of humour and irony essential in my life] 'no one had these sort of new fangled illnesses when i was a kids. there was a war on and you just got on with it'. the fact that he had been talking about one of his aunts that lived on the sofa and always had something wrong with her, less than half an hour earlier and about his sister that had retired to bed for 5 years for some imaginary illness that effected her legs. he referred to them both as a creeking gate than never breaks [i think that was the saying.. may have got that a bit wrong] when i explained that those creaking gates was probably FM sufferers or ME sufferers he was gob smacked.... he then went to on to point out that they had both lived into their 90s. .
How patronising and unforgiveably awful! I used to think that it was fibro that CAUSED the sls, not the other way round. Thanks for enlightening me!
Just such a load of trash from this doc. I had a good life I really enjoyed, and needed to live to be 100 to fit everything in. Sure i'd had bad times in the past, but they were past! Since I developed Fibro etc 10 years ago, all I've wanted was to get back to my life how it was, not step into a new shitless one! We do have to learn to get on with it, us sufferers
i know my doctor don't believe in them. and he will not send me anywhere to find out either
Doctor's nearly killed my sister recently. They answer to no one since the BMA does nothing in terms of righting wrongs. She has decided to screw that miserable ba5&ard for everything he's got. She had complained of pains in her jaw, dizzines, pains ih her chest for five weeks - he said it was wind! She had a heart attack last week at 50. Disgraceful.
if i thought for one minute that this hideous illness was in my head which i have been told so may times i think i wouuld have the strength to say go away and do one and leave me alone,
believe me i have tried so many times . to no avail
yes unfortunately thats all we can do x
Hear, hear. Totally agree.
comes from very victorian type views. Female hysteria, or 'vapors', many women were given laudenum. think thats where this kind of woolly thinking starts and unfortunately becomes bit of an urban myth, self perpetuating through years 1xx
I think the problem is we do not distinguish the true meaning of the word 'stress' this can be both physical fatigue and mental but in todays world it is still :
>>considered personal failings/lack of ability on the individual to preform a task/s adequately>> it is made out to be some sort of lacking in the person affected.
employers endorse this belief, as it remove the onus on them to correct issues and provide a healthy work environment and sort out the real issues (mainly overworked), bullying, lack of resource, etc.
i am not demeaning mental stress either, but it is important the true definations of stress are bought out in the open.
we all know stress is one of the key associations for many fibro suffers, yet all the groups try to not focus on it or find out the statistics behind it in our cases.
since being ill i have met a lot of very capable high ranked career people whom due to their work environment feel they have developed the severe form of condition. this information is important and needs to be highlighted.
we all know it is the A type personalities, from either creative and care giving backgrounds that tend to develope this. maybe there is some sort of association with woman and their bodies nurturing responses that results in us coping with extreme levels of stress until we break. woman multi-task, men generally do not! obviously not all men but you understand my point.
stress needs to be properly defined and its association brought out correctly with the condition. if it is not addressed i fear dr's are always going to close their ears or keep trying to firstly shunt us down the physiological excuse/path/
my analogy is during war soldiers were systematically tortured, over prolonged periods of time. the torture did not even have to be too physical, the chinese dripping tap for example. well at some point they mainly break. we face a similar existence but somehow manage to carry on with some bad days of anxiety or feeling down. it should be preached from up high the firbo suffers is strong, given what they have to contend with. would any doctor not do whatever it takes to help a tortured solider recover. yet we are mainly left looking and finding out about our own illness and educating doctors.