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And while we're ranting...

Via susanstinson, some fabulous information about what it's like to be diabetic. This person has type 1 and I have type 2, but about 80% of what she says, especially about how she reacts to what other people say to her, is true for me as well.

http://www.queeringdiabetes.org/substance/invalid.html

(note, about 2/3 of the way down the page there is a photo that might be disturbing and/or unworksafe)

And these quotes from http://www.queeringdiabetes.org/sicko_journal/020722_bloodsugar_theories.htm ring pretty true, too:
The thing is that over time, learning about diabetes has started to feel like a Monty Python sketch.  "There are three things that will affect your bloodsugar level: food, insulin, and exercise.  No, I mean, four!  There are four things that will affect your bloodsugar level: food, insulin, exercise, and stress.  Yes, four things.  Well, no five really, five things that will affect your bloodsugar level: food, insulin, exercise, stress, and your menstrual cycle.  Right, five things."  And as diabetics have been testing our bloodsugars more frequently, we and medical professionals have been looking for patterns to figure out what else might be going on, developing theories (that's inductive research for you methods geeks out there), adding to the list... "Did I say five?  I meant six..."
and this one:
There is a nasty shaming voice in my head, and I hope it's not yours, saying "Well, if you knew that this would cause problems, then why did you do it?!?  Stupid girl.  Bad diabetic.  Bad."  Sad smile.  That's some f*cked up shit that "Bad diabetic" stuff, huh?  Not a lot of fun to carry around all by myself, I can tell you that much

Comments

( 16 comments — Leave a comment )
cjsmith
Jun. 25th, 2004 11:08 am (UTC)
My only quibble would be about her assertion that someone who is not diabetic cannot say they have low blood sugar. I've tested my blood sugars; I'm not an idiot; I'm not playing armchair doctor; I'm stating an observable and measurable fact. She doesn't own the term "low blood sugar".

But that's my only quibble in a long and interesting page.
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firecat
Jun. 25th, 2004 11:57 am (UTC)
See my response to cjsmith re: low blood sugar.

I will, and you haven't. I generally only think people are being stupid or insensitive if they start giving advice or questioning me in a way that looks like it's working up to giving advice. I can't imagine your doing that since I'm sure you have the same reaction to such behavior that I do.
firecat
Jun. 25th, 2004 11:53 am (UTC)
Yeah, I don't really care what other people call their ailments, myself, unless they are trying to claim some kind of privilege over me. And I've never heard someone try to claim privilege over me by using the term "low blood sugar."

This may be because low blood sugar isn't one of my frequent issues. I don't use insulin yet.
cjsmith
Jun. 25th, 2004 01:21 pm (UTC)
[nod]. I bet she gets really tired of hearing people say "low blood sugar" when they CAN, as she put it, go on hiking or whatever else. (I can't, when I'm low. I fall down go boom. I carry glucose tabs.) That must feel like it's completely ignoring what her body's doing when her sugars are low.

I appreciate hearing the frequent reminders that playing armchair doctor is really annoying. mactavish has linked to similar information from people with rheumatoid arthritis. Both diabetes and arthritis are things that are just common ENOUGH that people who don't have them -- like me (so far) -- have still heard a lot of tidbits about them. It's good to remind myself that people who DO have them have heard a lot more than just tidbits, and while they might appreciate my support they probably don't need my medical advice. :-)
firecat
Jun. 25th, 2004 04:49 pm (UTC)
And even if you do go boom from hypoglycemia, you don't risk going boom every day from the exact substance that you are injecting in order to survive but that will also kill you if you're not vigilant enough. You have to be vigilant about what you eat, but not as constantly vigilant as someone who has to take multiple injections a day.
cjsmith
Jun. 25th, 2004 05:10 pm (UTC)
Oh, definitely; all of that is also true.
lysana
Jun. 25th, 2004 01:21 pm (UTC)
Yeah. I had no idea non-diabetic hypoglycemics weren't allowed to claim they have low blood sugar problems. I also had no idea that people who haven't eaten in six hours don't have low blood sugar, either. As someone who was borderline hypo until I fixed it with dietary changes, I find that silly.
firecat
Jun. 25th, 2004 05:00 pm (UTC)
People who aren't type 1 diabetics might have a condition that is called hypoglycemia, but it's not as serious or as persistent (which your comment "I fixed it" proves) as the condition of the same name in type 1 diabetics. They regularly take a substance that has a side effect of chipping away at their sensitivity to low blood sugars. So their blood sugar can drop to a life-threatening range without their realizing it. That's pretty fundamentally different from having low blood sugar or rapid blood sugar swings that make you feel lousy - it's supposed to make you feel lousy; that means the system is working.
branfionn
Jun. 25th, 2004 12:46 pm (UTC)
Great Site & why don't you....(?)

That was a great and informative site - very helpful.

You know, this might be your opportunity to tell everyone here what you would rather never hear again and be done with it - then just keep up with new friend...(wink)
ruth_lawrence
Jun. 25th, 2004 04:08 pm (UTC)
I liked this, thanks firecat.

I have type 11 diabetes. Looking back, I think my metabolism of carbs may well have been...idiosyncratic.

when I went to find out about my condition, I, too, found a lot or pious, contradictory stuff, and supposition presented as fact.

I also have asthma (quite bad), and *there's* a minefield of crap from others. I'm lazy or crazy, right? I'm stealing their tax money!

Often I want to say to folks like Armchair Doctors, "But will the example from you life kill you? If not, shut up'.

I note that people are being very understanding of my Mothers sight problems (which is cool). I hypothesise that folk understand blindness much better than metabolic or immune diseases *because it gets dark*.
wordweaverlynn
Jun. 25th, 2004 05:05 pm (UTC)
Not to mention the shit I get from people who see my eczema. Everything from "What did you do to your hands?" to the woman at work who grabbed my arm, dragged me into her cubicle, and made me put on some of her hand cream. ("I get dry skin too. This will cure it!")

And the people who endanger my life by not taking my food allergies seriously. I actually used to like celery. It's only the past twelve or thirteen years that it has been so dangerous to me.
ruth_lawrence
Jun. 26th, 2004 01:31 am (UTC)
Oh, yeah. I get excema too, and the stuff folks (including doctors) think ought to go on it will make it far worse. And it's seen as dirty. And I can't use a truckload of various soaps, shampoos, deodorants, lotions, cosmetics and so on.

I don't have dangerous food allegies, but I do have allergies, and people just won't rmember that. Good training for the diabetes (they think I can eat anything except sugar).

May imps carry them off!
firecat
Jun. 26th, 2004 10:38 am (UTC)
"I'm stealing their tax money" is something I've heard a lot lately.

I understand your point about blindness/sight problems, but I've also been in a restaurant with a blind person, and when she asked the waitress a question, the waitress said, "Can't you see? It's right there in the menu."
ruth_lawrence
Jun. 26th, 2004 01:03 pm (UTC)
Oh dear. *That* called for the dead herring slap of cluefulness.

The persons wasting the tax money are the parading whomevers in our respective governments I'd have thought. But yeah.
ailbhe
Jun. 26th, 2004 08:17 am (UTC)
My mother has type 2 diabetes and hasn't been told *anything* about how to manage it; her GP said "cut down on sugar and fruit" and that was *it*. She can't afford medical care, so she doesn't get any.
firecat
Jun. 26th, 2004 10:39 am (UTC)
Yeah, there's that kind of attitude about it, too.

If you would like some resources to pass on to her, I can probably dig up some.
( 16 comments — Leave a comment )

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