Permission to repost Positive thinking It might sound good, or at worst harmless to encourage people to have a positive attitude and

think positively about an illness. But this might not be true. With severe and prolonged illness the changes imposed can be sweeping. Real world perceptions are altered right down to the level of 'who I am' and 'what is important' and 'where do I belong'. Anger, frustration and fear might not only be normal and inevitable - but actually good ways to respond. Nobody wants to lose their identity and beliefs about who they are. But if radical changes to these are imposed by circumstances then such an upheaval in the psyche is probably going to involve a major struggle. A positive attitude might sound courageous but it may be simply denial or a defence against the challenges to the ego. Attempting to deny the changes and limitations of a life-altering illness may be nothing more than childish wilfulness and denial. Clinging to the way one used to be or hoping to regain what has been lost is automatic and common. So is anger and blaming (both rational and irrational). As Bowlby remarks: "Anger, it is not always realized, is an immediate, common, and perhaps invariable response to loss... - evidence makes it clear that anger, including anger with the person lost, is an integral part of the grief reaction." If the sense of self is lost or drastically changed, and therefore the lost person is oneself, it is not difficult to imagine that anger is likely to be inevitable and with no rational target to direct the anger at - it might go anywhere. Bowlby also states: "If, however, the urges to recover and scold are automatic responses built into the organism, it follows that they will come into action in response to any and every loss and without discriminating between those that are really retrievable and those, statistically rare, that are not." People with severe M.E. are highly unlikely to ever be the same as they were before they got ill. Full recovery is rare. The prognosis for people with milder CFS is better, but still not particularly good. In spite of this, the rule seems to be - don't accept that you are one of the unlucky majority; you can be the one that recovers if you really want to; if you do the right things and think the right things you will be ok. It might be all very well for such wilful optimism to be a personal choice; but the fact is that everyone is subject to bullying that dictates that this is the 'right attitude'. My impression is that a result of this is that the small minority, those that might completely recover, are the ones that must be pandered to. They must not be confronted with doom and gloom. They must not accept, adapt, rediscover

themselves and the world where everything has changed. Why? Why this delicacy maintained for the benefit of the few lucky ones? This delicacy makes the horror experienced by too many people a shameful thing that must only be discussed with others sharing a similar experience, or something that must fester privately in one's own thoughts. This should not be necessary. It deprives the majority of the opportunity and the right to adjust in the best way for them, to the devastating changes to their life. As Bowlby points out: "Only after every effort has been made to recover the person lost, it seems, is the individual in a mood to admit defeat [isn't this a victory?] and to orient himself afresh to a world from which the loved person is accepted as irretrievably missing." Getting over this hurdle and accepting a new world reality is a great achievement and one that is likely to be enormously beneficial to the individual. But it seems that admitting this must be avoided. The wessely school would have us believe that if one of the minority that have a good prognosis went through this process - they would be doomed to a life of illness; presumably because they would not be able to recognise if they actually recovered; having been programmed into 'illness behaviour'. It really is a stupid as it sounds. But unfortunately people buy into it because they want to believe they have control over their life, their destiny and their illness. They want to believe they can 'choose' to be well. And they most definitely do not want to believe that the 'person lost' is never going to be recovered - in spite of the odds making this the most likely outcome. Some of the Wessely school have built their careers on what amount to Positive or Negative Thinking theories. They've delved into the minds and observed the behavior of people with M.E.; done their little sums and strutted their scientific stuff in medical journals. When their own research tells them in figures they cannot deny, that they are wrong - they go right ahead and do the research again. And they will keep right on repeating it because they just cannot accept the truth. That is what Positive Thinking can do for you. Help you to deny reality, live in a fantasy world where it WILL be the way that you want and nobody and nothing can prevent that. As a belief system, it might well be one that most people will hold onto for at least some time when their life changes drastically. They may even choose consciously or unconsciously to maintain those beliefs because they suit them. It is their choice. But is foisting or fostering such an irrational belief system in others justifiable or ethical? Some people make a lot of money flogging pipe-dreams and I believe some get a warped psychic buzz out of convincing people they can control things that are in reality, beyond their control. I have some unprintable thoughts about such people; but they would probably dismiss me as 'negative'. Peter Kemp April 2012

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