....but many of those things you point out - disruption of social niche,
redefining relationships are all external to the condition - tolerance in
modern society appears to be only given if it appeals to the most part to a
set of values defined as 'normal' when tolerance should be about disrupting
normality and changing the way we think and value how we live our lives
- in my experience and in those i interviewed the main cause of
psychological suffering was not the illness itself but the inability of
those around include family and friends to deal with a disruption of their
value systems and above all the expectations that come with a modern society
that has obssesive compulsive disorder in terms of the future - pensions,
years lived, future plans etc
- indeed, while the people i interviewed had had a chronic illness from
childhood it was the expectations and psychological response of their
parents and friends that caused the most upset in their lives while they
were trying to build their life around what they had
- one had to wonder about the psychological health of the parents and
friends sometimes who were not able to adapt, were stuck in one way of doing
things and had no skills to think about life in different ways -
- this is not to deny any physical suffering or psychological suffering
because of the illess, but to rebalance the equation of what was described
as societal burden and sufferring because of the illness that was put
forward in the new book about chronic illness.
-I would not deny supportive counselling or psycholgical help but it is
crucial that people recognise that many of the limiting factors in chronic
illness are not due to the illness but factors external to it - this is
particularly true of those children who in modern society grow up with a
chronic illness from childhood into adulthood like myself and those i have
spoken to...I am not a burden to anyone - i am more indepenent than most of
my healthy peers - i have a doctorate, i travel etc...it really is inuslting
that language like burden is still used...it would never be tolerated in
terms of race or gender...and yet here we have so called experts defining
the language of how 'experts' in the medical field etc will understand the
lives of people like me - i had enough of that when i was a kid - not
another generation please !!
Yours
Glenn
-----Original Message-----
From: George Singer [mailto:[log in to unmask]]
Sent: 12 June 2002 12:13
To: [log in to unmask]
Subject: chronic illness
I have followed the comments on this issue with great interest. Here in the
US we are infamous for analyzing social and political problems in
psychological terms. Perhaps the most egregious example is the construction
of the recovery
from Vietnam War as largely a matter of individual treatment for
post-traumatic stress disorder rather than a national discussion over
mindless policy. I agree that chronic illness, as with most disabilities,
is largely defined by the medical worldview while people. While the
biological aspect of disease absolutely must be attended to, there is
little recognition that chronic illness percipitates varying degrees of
segregation from family, friends, and large social organizations. In the
US chronic illness can quickly bankrupt a family if they are uninsured and,
if insured, they are left to the tender mercies of a profit driven system
that is as
friendly as Her Majesty, Queen MacBeth. That said, it seems to me a bit
exteme to deny that there is a substantial psychological component to
chronic illness that may not only be due to a free fall from one social
niche toward the bottom of the social hierarchy, but also there are day to
day hassles, physiological causes of mental suffering, loss of control, and
disruption and redefinition of close relationships that are difficult for
many people. These challenges may indeed lead to transformation including
political activism.To address these concerns outside a social justice
framework is certainly misguided. But to simply dismiss this side of the
experience and the real possibility of effective assistance in a limited
domain seems to me too narrow a view.
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