Janet Kaiser on sun 22 jun 03
I do not think scorning people and their current personal attitude towards
various life-changing ailments and conditions is at all helpful, do you? I
object to the recent "they have a problem" and macho "I suffer more pain
than them, but I cope fine" type posts. Negative attitudes and name-calling
do nothing but boost the ego of the writer and is as out of place talking
about pain as it is about pots! More so to my way of thinking.
At best we can give them the benefit of the doubt and suppose they are
individuals who have had longer experience of both coming to terms with
their condition and coping with it. But they have obviously forgotten the
various stages they themselves went through to reach their present sublime
state and the support from others which they themselves enjoyed along the
way. From professional therapists to family & friends, including cyber pals
like many kind people on Clayart who would never dream of sending a "pull
yourself together" type post!
Every one of the conditions or diseases which produce disabling symptoms,
including chronic pain in the human body or parts thereof, starts off
either slowly or dramatically until one sooner or later consults a doctor,
gets a final diagnosis and then starts therapeutic treatment which will
hopefully alleviate the symptoms, including the pain levels. The gap
between symptoms manifesting themselves and a final diagnosis can be a
matter of hours, days, weeks or months and some (such as migraine
sufferers) never find a cause or a cure, whereas others have a pretty
definite diagnosis and can find out what the prognosis is, as well as take
an active role in their own treatment.
Once one has a handle, there is a period of psychological adjustment and
coming to terms with the condition, especially if it is going to be "for
life", appears it will change one's working abilities or lifestyle and
especially traumatic if life itself may be shorter as a result of the
condition. The bewilderment "why me?", the anger "I don't f***ing well
deserve this!", the depression "boo-hoo I am so unhappy/unlucky sob-sob"
and finally the gradual acceptance of all the implications, takes time and
individuals react differently along the way.
Not only is that going to be anything from stoic no-comment of the "grin
and bare it" school through to constant whining... Pain is as bad as each
individual person feels. Pain cannot be measured or quantified. Even the
language describing pain fails, because it varies from person to person and
is such an individual experience that it makes a nonsense of any comparison
with others -- even fellow sufferers with the same condition and similar
symptoms.
We all know someone who very rarely has suffered a headache, who then
describes one cured within an hour by taking half an aspirin as a "terrible
migraine", whereas the migraine sufferer would describe the same pain-level
as "mild discomfort". It is all relative to experience and the pain
thresh-hold varies... BTW did anyone read about that guy who amputated one
of his own limbs when it got stuck between rocks out in the desert? A real
"do or die" action if ever there was one!
And sometimes one does not even have to suffer pain, before life becomes
unbareable... I knew someone who committed suicide because she could no
longer cope with severe tinitus she had suffered for many years. It took me
a mere week of a strange ringing in my ears during a bout of pneumonia to
even begin to understand.
Of course a positive attitude can lighten the burden, whereas depression
and negativity make the whole process, including pain management even more
difficult for the individual sufferer as well as those they live and
socialise with. Of course it is not going to be easy either way. It takes
time and patience for everyone involved.
However, anyone who is honest with themselves will admit that they do have
good days as well as bad, however well they are managing and in control.
They went through all the highs and lows of coming to terms with their new
circumstances and have only learned that life is still worth living and one
can remain active through their own experience, not from what they were
told or read. They did not "get" it right from the start. No one does. It
is hard work all along the way... Adjusting, coping, learning to pace
themselves, organising living and working to suit their condition on an
hourly or daily basis. And those who have made that painful journey, should
be the very last to get impatient at others going through the same process!
Indeed... Who else is as well-qualified to provide a sympathetic listening
ear whilst others go through the whole process? A fellow sufferer can be
one of the best support systems for those reaching towards self-help and
independence, so to deny them that is pretty mean spirited in my opinion.
It does not cost the world to share experience and advice in a supporting,
caring manner.
If one is not prepared to do that, it would surely be better to keep
schtumm rather than spout an arrogant, uncaring attitude towards others,
which only reveals the ugly side to human nature? Reminds everyone why
there are physically and mentally abused, disabled and elderly people in
private and care homes. A twisted and ugly "survival of the fittest" in
action it may be, but it is neither pretty to witness nor hear about!
Sincerely
Janet Kaiser - thankful for all the wonderful support I am receiving and
hopeful my participation in clinical trials will also help others in the
future.
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TRUTH is too precious to tell every fool who asks for it...
****** This post was sent to you today by Janet Kaiser *******
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Tel: ++44 (01766) 523570 URL: http://www.the-coa.org.uk
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