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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. Realworld perceptions are altered right down to the level of 'who I am' and 'what isimportant' and 'where do I belong'. Anger, frustration and fear might not only benormal and inevitable - but actually good ways to respond.

Nobody wants to lose their identity and beliefs about who they are. But if radicalchanges to these are imposed by circumstances then such an upheaval in thepsyche is probably going to involve a major struggle.

A positive attitude might sound courageous but it may be simply denial or a defenceagainst the challenges to the ego. Attempting to deny the changes and limitationsof 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 isautomatic and common. So is anger and blaming (both rational and irrational). AsBowlby remarks:

"Anger, it is not always realized, is an immediate, common, and perhaps invariableresponse 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 isoneself, it is not difficult to imagine that anger is likely to be inevitable and with norational 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 theorganism, it follows that they will come into action in response to any and every lossand 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 beforethey got ill. Full recovery is rare. The prognosis for people with milder CFS isbetter, but still not particularly good. In spite of this, the rule seems to be - don'taccept that you are one of the unlucky majority; you can be the one that recovers ifyou really want to; if you do the right things and think the right things you will beok. It might be all very well for such wilful optimism to be a personal choice; butthe fact is that everyone is subject to bullying that dictates that this is the 'rightattitude'.

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 beconfronted with doom and gloom. They must not accept, adapt, rediscover

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themselves and the world where everything has changed. Why? Why this delicacymaintained for the benefit of the few lucky ones? This delicacy makes the horrorexperienced by too many people a shameful thing that must only be discussed withothers sharing a similar experience, or something that must fester privately in one'sown 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 devastatingchanges to their life. As Bowlby points out:

"Only after every effort has been made to recover the person lost, it seems, is theindividual in a mood to admit defeat [isn't this a victory?] and to orient himselfafresh 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 achievementand one that is likely to be enormously beneficial to the individual. But it seems thatadmitting 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 - theywould be doomed to a life of illness; presumably because they would not be able torecognise if they actually recovered; having been programmed into 'illnessbehaviour'.

It really is a stupid as it sounds. But unfortunately people buy into it because theywant to believe they have control over their life, their destiny and their illness. Theywant to believe they can 'choose' to be well. And they most definitely do not wantto believe that the 'person lost' is never going to be recovered - in spite of the oddsmaking this the most likely outcome.

Some of the Wessely school have built their careers on what amount to Positive orNegative Thinking theories. They've delved into the minds and observed thebehavior of people with M.E.; done their little sums and strutted their scientific stuffin medical journals. When their own research tells them in figures they cannotdeny, that they are wrong - they go right ahead and do the research again. Andthey 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 afantasy world where it WILL be the way that you want and nobody and nothing canprevent that. As a belief system, it might well be one that most people will holdonto for at least some time when their life changes drastically. They may evenchoose consciously or unconsciously to maintain those beliefs because they suitthem. It is their choice.

But is foisting or fostering such an irrational belief system in others justifiable orethical? Some people make a lot of money flogging pipe-dreams and I believe someget a warped psychic buzz out of convincing people they can control things that arein reality, beyond their control. I have some unprintable thoughts about suchpeople; but they would probably dismiss me as 'negative'.

Peter KempApril 2012