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Re: [IP] Expressing Emotions -- FRUSTRATED!!!

[soapbox posting - D.P.]:


I've been Type I for about 25 years.  Not only referring to the pump list
but also to misc.health.diabetes ng; I have noted that the expression of
frustration is often confused with "feeling sorry for one's self",
especially by "newbie diabetics" (say, <20 years' duration).  I have been
active with diabetes on the net for over two years now and have recognized
that for *most* long-term diabetics (20 + years) the support and
information needs are extremely different than those of the newbies.  After
about 20 years the focus for info gathering changes from "simple" diabetes
mgt to managing complications and chronic pain.  One reason we see so few [
:-( ] longer term diabetics on teh net is becasue many of them don't have
the eyesight to use a computer.

This winter, before I got sidetracked by my father's death and the
simeltaneous receivership action against my company, I was endeavouring to
set up a primitive mail group for the victums of DBO:  Diabetes Burn Out.
This is what I think you have, Sue.  It seems ot come from decades of
trying but never acheiving perfect control and holding in one's
frustrations about diabetes or it's complicatoins coupled with a lack of
emotional support.  IMHO:  The only cure is get support (which I've done
via the net).  I'll keep your email for this list, Sue, when i get it up.

About the younger diabetics:

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 feel sorry themselves or
dwell on negative aspects but *vent*) as much as they are encouraged to
express the positive aspects OR ELSE:  The child will most likely end up
with severe anger/depression problems 10-30 years down the road!

Indeed I find all of my anger comes from not 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 was "not a big deal" and that it was 100% controlable.  Was I ever
wrong!  This however was what my family and doctors wanted to hear me say.
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 wiht any chronic disease (I was one) know from a young age that
the last the last thing their parents want to hear is anything negative.
The parent's body language says it all.  So unless encouraged very
forcefully, we kids withhold all our frustrations about daily diabetes mgt
and the fears for the future.

You want to know what really creates anger:  being lied to.  As a kid,
people would see teh 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:  It makes one feel guilty and inadequte
when you do get diagnosed with a complication and it makes kids realize at
some future point that they were lied to.  By far, many of us grew up lying
about out tests as the judgement passed on us for having "bad" tests was
too difficult to deal with.

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 shamefull to express any
frustration to ourselves let alone the family group.

For me as well as dozens (hundreds?) of other diabteic kids I've talked to
(who are now adults) who were brought up being "forbidden" to express
anything but positive feelings.  Upon becoming adults all the balled up
anger and frustration has manifested itself in rebellion or denial or worse
psychological problemns.

We swallowed the physical discomfort caused from hours of high bg.  We
accepted that high bg's meant we were bad or poorly self-diciplined (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 because
it was a shame to ever get frustrated about a "controlable disease".
Especially when we were in a children's hospital filled with kids in
wheelchairs since their birth.

hmmm... ...I wonder how many physical complications are caused in later
life by growing up with a negative self-image due to feeling it is a shame
or a sin to have frustrations and hence something must be wrong with us.

I can give a personal guarentee that, for whatever reason, not being able
to express frustrations (adult or kid) will hurt diabetes mgt at some point
in a person's life.  The frustration and anger catches up to you *as
surely* as poor control will.

Life isn't all numbers and ratios; neither is good diabetes mgt.  Good
diabetes mgt starts at good mental and emotinal health. Something no one
can have if they continuously hide their frustrations.

Doctors don't have time to deal with patients' frustrations.  Many of us
have no freinds or families to act as a support group.  Sue:  There are
places on the net in which welcome peopel are realistic and mature in
accepting their anger and frustration with diabetes.  Seek them.  Here's a
starting point:  Go to the #diabetes channel on undernet.  Ask me if you
are unfamiliar with IRC.  great peopel there!  One guy has been type I for
40+ years and has managed great control!  one girl is 24 years old and is
on her third kidney transplant!  And both of them can talk about their
respective conditions *without being judged*!

Diabetes is destroying my life despite 25 years of effort to control it (9
on MDI).  It's very angering to try and function when I spend half the day
sick from high bg and hald out of my mind from hypos.  Statistic keeping,
spreadsheets, lazer apts, 24 hour urines etc etc.  Still this is tempered
when I talk to those who haev *no life* due to kidney failure.  Again, be
thnakful for what we have; someone else is always worse off!  This is no
reason to withhold frustrations though.

There is no place in diabetes for judgement.  Leave that at the door please.

>After spending last night in the ER (again) and having my Endo
>completely contradict himself several times, I feel like maybe just
>giving up.  Apparently no one cares ... so why should I?  Maybe if I am
>lucky this damn disease will kill me sooner instead of later then I
>won't be your problem or anyone else's!

I know *exactly* how you feel!  I go thru this everytime I visit a doctor!
In the end you must realize that *nobody* really does care.  In any aspect
of life; you must look after yourself because nobody else will!  We are all
responsible for ourselves.  It is very frustrating; not as much the
diabetes; but dealing with ignorant doctors (most of them).  So take charge
of yourself and vent your frustrations.  Obviously the pump list is not the
place to vent as many members of the list are in denial and cannot handle
the realities of diabetes.

email me anytime Sue; I'd love to hear from you!  Keep up the fight.
PLease don't allow the few people on this list who are in denial to
discourage you form seeking a pump or participating in this forum!

Darrin Parker
email @ redacted   Nova Scotia, Canada!

"Silence is a lie.  Silence has a loud voice.  It shouts, 'Nothing
important is happening -- don't worry.' So, when something important IS
going on, silence is a lie."  -A.M. Rosental

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