Friday, April 20, 2012

Positive Thinking

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

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

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
* * *
I've recently had an experience with someone telling me that I can cure myself with positive thinking and vitamins.  She didn't want to hear that I've tried that and failed.  Apparently, she might have to feel sorry for me if I have an incurable illness with no known treatment, so she just repeated that I should think happy thoughts and tell myself to get up off the couch and "just do it", you can do whatever you think you can do.
I chose to end the friendship, because I don't need someone imposing their idea of "should"s on me.  I'm realistic in saying that yes, the chores should get done, but I am not physically capable of doing them.  I have doctors' orders to not lift, climb, use my arm above shoulder level, etc., and that's what I listen to, not people who have no medical training but think that they know what I'm capable of.
I have a family member who can't get her head around it that just because I can sit on the couch and knit does not mean I'm physically capable of cleaning the house.  I don't need more people telling me the same thing.

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