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[IPk] Rant: Whose diabetes is it anyway?
Recalling my first couple of years with diabetes, it seems to me that
instilling a sense of personal responsibility in a child who has it is a
much more crucial step than achieving absolutely perfect bgs by any means
necessary. What will happen if a child with diabetes who has been nagged to
do every test and every injection since age 5 or so goes off to uni at age
17 and suddenly doesn't have Mum or Dad or a teacher or a nurse looking over
his/her shoulder? Disaster, that's what. I've heard of four Oxford
undergraduates admitted to the John Radcliffe Hospital in VERY bad states
after alcohol-and-no-insulin binges within the past few years (and no doubt
there were more).
Most Oxford undergrads are pretty clever. Why on earth would they allow
themselves to get alcohol poisoning and DKA? Because in large part they
viewed diabetes control as they did schoolwork, as something done to appease
yet another authority figure, to be accomplished by the means provided. I
have talked to a few Oxford students who believe that one HbA1c per year is
appropriate because that's what their GP said. They felt that if they
weren't getting along all right on the regimens their doctors suggested, it
was their lot in life to feel crap while smiling as they won awards anyway.
And these are future leaders in business, industry, technology, the civil
service, academia, and whatever else.
As I see it, if a child with diabetes does not acknowledge feeling
physically ill with a hypo or a high bg, his or her 'locus of control' (to
use a buzzphrase from a 'Women and Leadership' seminar I had to take in my
second year at university) remains totally 'external'. Until someone with
diabetes is able to say, 'I know I need to take my insulin when I need it
because I feel bad without it and could suffer badly in the long term; I
know I need to eat something when I'm low or I might get really, really
sick; I know I need to test my bg or I don't know exactly what's happening
inside my body', he or she is aiming at targets set by others and may feel
no compulsion to shoot for them if the figures providing pressure step away
for a moment.
I have been lucky to have always had an 'internal locus of control'
regarding diabetes: as I was 12 when I was diagnosed, my parents have never
had to do so much as test my bg for me, much less give me an injection or
change my pump set. I don't have kids and so can't comment on how hard it
could be to do, but perhaps saying to one's son or daughter, 'How do you
feel without any insulin?' when a bolus or injection has been missed and
listening patiently to the answer might be constructive. If a child doesn't
value his or her own perception of well-being but is on a quest to please
Mummy, Daddy, and the GP, he or she would seem to me at high risk for
someday rebelling against all he or she has been taught to do to keep
his/her diabetes under control. If speed limit signs were taken off the
roadways and the police were all on strike, what would motivate any of us to
drive slower than 80 m.p.h.? Only a rationale that we had accepted for
ourselves, whatever that rationale might be.
Q. How many psychologists does it take to change a light bulb?
A. Only one, but the light bulb must really want to change.
--And so it goes with the question 'how many people does it take to live
with diabetes?' Only one, but the person must really want to survive.
Viva la revolucion,
IDDM 9+ years; MiniMed pumper 6+ years
Co-ordinator, Oxford University Student Union Diabetes Network
D.Phil. candidate, Faculty of Modern History
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