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Re: [IP] Living with Diabetes Psychologically

Natalie, I think you're right that a lot of what we do to take 
care of ourselves is invisible. So much of it happens inside 
our heads. And our society is so intolerant of anything that 
could be considered "weakness" or "dependence" that we're 
under constant pressure to hide our condition. 

But I also think you're right that for the most part we're 
dealing with ignorance, not bad intentions. If we're honest, 
we all have to admit that most of us are ignorant about what 
it's like to live with other equally cruel chronic diseases. I 
know people who have MS, AIDS, chronic pain, narcolepsy -- 
and I really only have the faintest inkling of what they live 
with every day. I have a friend who has a form of muscular 
distrophy. He's been in a wheelchair most of his life. He has 
use of his head (and everything that's in it!) and partial use 
of one arm. I know that he needs assistance in order to go to 
the bathroom, but I don't know the details, and I don't really 
want to. And if you want cruel and insensitive, you should see 
the way people treat him, and the stupid questions they ask 
him.  (I know that it sometimes seems that people with visible
disabilities get all the attention, but the flip side of that is 
that their disability is impossible to hide -- they're "on stage" 
every minute they are in public, whether they want to be or

An acquaintance who has narcolepsy (Teresa) has written 
some about what it's like to live with.  It's a really horrible 
condition -- basically you feel as though you've been up for 
48 hours straight ALL THE TIME, and there's no effective 
treatment for it. Anyway, one of the things that Teresa wrote 
about it (I'm paraphrasing) is "Being sick all the time is boring. 
Boring boring boring. Every once in a while something terri-
fying happens, just to keep you on your toes. Then it goes back 
to being boring." Now, this describes my experience of diabetes 
so well that I've never forgotten it. Boredom punctuated with 
terror is about it. I can kind of get into the technical details, 
be a diabetes geek, but I only do that because it helps me cope. 
And of course, underneath the stupid picky details, the food 
arithmetic, the clock-watching, is deep-rooted fear: fear of 
death and disability; fear of failing; fear of being abandoned.

So when trying to explain what diabetes is like to people who don't 
have a chronic illness, I try to get across both: the terror, and the 
boredom. I find that people are respectful of the terror, but really 
impatient with the boredom. For example, just before Christmas, 
we had an eggnog party at work. One of my co-workers asked me 
whether I'd need to take some extra insulin for the eggnog. I said yes, 
grabbed one of the eggnog cartons and started explaining how I used 
the nutrition information to calculate how much insulin to take. I 
should've known better. She and another co-worker (both thin young 
women, by the way) immediately panicked: "No, don't show me that! 
I know it's full of fat -- but I'm going to drink it anyway!"  I tried to 
explain once more, then finally gave up. (My poor co-worker -- I 
guess she just didn't realize what she was letting herself in for!) 

But anyway, I do find that whenever I try to explain the technical 
management stuff, people tend to lose interest really quickly -- even 
if they asked me about it in the first place. People just aren't prepared 
for that level of detail. As Jon Carroll, a San Francisco newspaper 
columnist who has type 2 diabetes said: "The director's cut version of 
the answer to the question 'How are you?' could run 2 1/2 hours."

Then again, I'm long-winded -- as you all know by now

/Janet Lafler

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