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Re: [IP] Re: being different and self acceptance

>    I hope you are able to convince her that diabetes does not have to hold
>her back from being "normal".  Through your continued assurance that you love
>her, and that her "worth" is unrelated to the diabetes, she may learn
>patience and self-acceptance.  Of course first she has to work through her
>anger at how unfair life appears to be.  This is her choice.
> The most damaging issue in my
>life has been anger and lack of self worth.  At 13, I am sure your daughter
>will go through many stages.

I posted this to a news group some years ago in responce to a parent who
was looking for ways to punish her bad diabetic kid for having high bg's.
Here's a copy:

I've been type I for about 27 years. Being diagnosed at 9 years of age; I
am speaking as a big 9 year old when it comes to diabetes.

>From my own experience, kids must be encouraged to vent their negative
feelings and frustrations (not to feel sorry for themselves nor dwell on
negative aspects but to vent) as much as they are encouraged to express the
positive aspects or else:  The child may end up with severe anger
depression problems 10-30 years down the road!

Indeed I find most of my anger comes not from what I deal with now but what
I was "forbidden" to deal with as a child.  I used to lead the fight
against diabetes research and cure by telling people "it wasn't so bad" and
that it was "not a big deal" and that it was "100% controllable" and that
"a cure is just a few years away".  Was I ever wrong!  This however was
what my family and doctors wanted to hear me say.

Often parents' body language or words will show disapproval of the test
numbers.  As a kid, we see the disappointment and frustration on our
parent's faces when they see a "bad" test result.  We grow up in fear of
each test and doctor's appointment because anything less than perfect blood
glucose control may cause our parents anger and frustration because of us;
not the diabetes.

Please make sure you explicitly tell your child that your frustration or
anger is with the diabetes and not with him or her!

It's easy to deal with positive aspects and most people are in denial of -
or just too lazy to deal with - the negative aspects.  Children with any
chronic disease (I was one) know from a young age that the last thing their
parents want to hear is anything negative.  So unless encouraged very
forcefully, we kids withhold all our frustrations about daily diabetes
management and our fears for the future.

You want to know what really creates anger? -- Being lied to.  As a kid,
people would see the long term diabetics with their dialysis and
amputations and say:  "That'll never happen to you if you keep good
control".  This does two things:

1)  It makes one feel guilty and inadequate when you do get diagnosed with
a complication and

2)  It makes kids realize at some future point that they were lied to.  By
far, many of us grew up lying about our tests as the judgment passed on us
for having "bad" tests was too difficult to deal with.

Tests are facts to be dealt with.  Test results are not good nor bad. They
are simply facts to use as a tool in trying to achieve better control.
Absolutely nothing more.  Any health care professional who does not
understand this should not be practicing.  As the DCCT concluded;
complications are not directly correlated with how tight blood glucose
control is.  Tight blood glucose control can delay the onset of
complications but will not prevent them.

The medical personnel will often even encourage a kid to withhold their
frustrations by using phrases like:  "Now we don't want to hear that. Do
we?"  or "...there, that's nothing... ...just another little prick".  These
statements instruct us kids to feel that it is shameful to express any
frustration to ourselves let alone the family group.

We swallowed the physical discomfort caused from hours of high blood
sugars.  We accepted that high blood sugars meant we were bad or poorly
self disciplined (even though the highs just happened despite our best
efforts).  We rolled all the anger and frustration up into a dark, black
ball deep inside us.  It was a shame to ever get frustrated about a
"disease which we could control" and it was a shame or a sin to have
frustrations; hence something must be wrong with us?

For me as well as dozens (hundreds?) of other diabetic kids I've talked to
(who are now adults) and who were brought up being "forbidden" to express
anything but positive feelings found that upon reaching adulthood, all the
balled up anger and frustration had manifested itself into rebellion or
denial or worse psychological problems.

If you have a competent diabetes team:  No one will ever refer to tests as
being "good" nor "bad".  Comments like:  "we don't want to see that"  or
"I am so pleased with your tests"  will not exist.  There will be no hint
of judgment nor blame.  There will also be no false hopes (lies) given to
the parents or children.  Statements like:  "a cure is only a few years
away"  or   "you can grow up to live a normal life and be anything you want
to be"  will not exist.

The first tool any parent of a newly diagnosed diabetic child should be
given is a book on building self esteem in children.  If the emotional side
of diabetes management isn't being addressed as often as the physical side;
then you have an incompetent diabetes team.

Upon adulthood many of us find that in addition to various career
restrictions we can't get life insurance; no matter how tight our control
is!   Because of this we can't get mortgages, consumer loans, business
loans etc.   We are left in a gray area.  Since we are not disabled; we do
not qualify for special loans available to the disabled.  Yet because of
our health - no matter how great it is - we do not qualify for most loans
from any bank.  The fact is that kids with diabetes have limited career
options.  But we were told that we could have a normal life!

So what do you tell us kids?  All I can suggest is the truth:  "There is no
cure or control for your diabetes now but there might be in the future"...
...and...  ... "You might be an astronaut someday but first a control or
cure must be found for your diabetes.  That's why it's so important to keep
as good a blood glucoses as you can.  So if a control or cure is found; you
can be healthy enough to be an astronaut"!

I can give a personal guarantee that,  for whatever reason, not being able
to express frustrations (adult or kid) - or being lied to - will hurt
diabetes management at some point in a person's life.  The frustration and
anger catches up to you as surely as lack of blood glucose control will.
Life isn't all numbers and ratios; neither is good diabetes management.
Good diabetes management starts with good mental and emotional health.
This is something no one can have if they continuously hide their

Three things I wish parents and health care providers would remember:

1.  Kids are kids #1 and diabetics #2.

2.  There are no "good" nor "bad" test results.  Just the facts.

3.  No person can manage diabetes in a "good" or "bad" way if they simply
do their best.  You manage it the best way that you can and that starts
with gathering knowledge.  Don't stop at the diabetes team. Look to other
sources and to the experiences of others.

There is no place in diabetes for judgment nor lies.  Leave those at the
door please.

Darrin Parker
email @ redacted   Nova Scotia, Canada!

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