Analytical follow-up to all the posts about sickness.

[rivka]

wcg stopped by to spend time with me Saturday evening, and he seemed quite shocked by how sick I was. "I'm better today than I was yesterday or Thursday," I said, and he was shocked again. So then I was shocked - hadn't I been posting over and over again to my LJ about how I was incredibly, insanely, frighteningly sick?

Today I went back and looked. Actually, I hadn't. I'd posted a lot of things about my symptoms and what the doctor said and how frustrated I was, but I never said that I was sick enough to wonder whether I should be in the hospital. I never said I was afraid I would have a coughing fit in the bathtub, pass out, and drown. I never said that I was afraid to do anything but lie still when I was home alone. I never said that there was a point at which I was too sick to make myself a cup of tea. My posts sound like things were always basically under control, and they weren't. And yet I wasn't trying to "fake good." I was trying to be straightforward without being too whiny.

So wcg wasn't unobservant - I was underreporting. Huh. This is particularly interesting because it's been a subject of some tension between us before, on emotional issues - in that there have been times when I've been quite upset and he hasn't perceived the full extent of it. Although it's true that I don't want to be a drama queen, obviously I need to give more careful attention to the possibility that when things are bad for me I may not be communicating everything I intend to communicate.

Comments

[kalmn.livejournal.com]

straightforward without being whiny is hard hard hard.

i know that when my dad was in the hospital, visitors were always shocked about how sick he was-- they'd been getting progress reports from us, and reading what we posted on the web, but since we were trying to be as positive yet straightforward as we could about it, there weren't any posts about "in week three of coma; has lost forty pounds and looks gaunt; coughing such that you think he's going to choke and die". instead, posts about "not a lot of improvement, being fed through a stomach tube, still coughing but we're trying to figure out why".

blah blah blah.

anyhow. you're not the only underreporter out there. i'm sorry that it sometimes causes issues for you.

[ex-serenejo.livejournal.com]

I'm an underreporter, too. On the one hand, it fulfills a need for me (the need NOT to be fussed over when I'm sick). On the other hand, it isolates me from people who care. I'm glad you're feeling better. I'm so sorry you were so sick (not that I would be happy if you were just mildly ill, of course). I didn't realize how bad it was, either.

[mittelbar.livejournal.com]

Hmm. FWIW, I was also startled at how peaked you looked on Saturday, although I also thought "I should have guessed -- she went to the hospital. Duh." The surface impression I had was "Was pretty sick. Getting better rapidly." Perhaps the *fact* of reporting could be taken as an indicator.

(Also FWIW, I was afraid to touch you too much because I wasn't sure what might cause distress. Germs don't bug me much. Especially when they're allergies.)

[rivka.livejournal.com]

FWIW, I was also startled at how peaked you looked on Saturday, although I also thought "I should have guessed -- she went to the hospital. Duh." The surface impression I had was "Was pretty sick. Getting better rapidly."

Looking back at the comments I wound up getting, I see that that's the impression I was in fact giving to most people. Next time I'll try something more clear, like "OMG!!! OMG!!! I'm going to DIE!!!1!!1!"

I did look like hell on Saturday, didn't I. curiousangel swore that he was going to meet y'all at the theater, damn it. Otherwise I would have put on pants.

(Also FWIW, I was afraid to touch you too much because I wasn't sure what might cause distress. Germs don't bug me much. Especially when they're allergies.)

Heh. Actually, not touching was probably a good call. One doesn't want to be hugged all that much when one is struggling to breathe - and actually, even being patted or rubbed on the back was bothering me. Which was a shame, because curiousangel does that all the time.

"OMG!!! OMG!!! I'm going to DIE!!!1!!1!"

[mittelbar.livejournal.com]

Yes, that would be infinitely preferable.

This whole lung-design thing really has to be reconsidered.

[jenett]

Lung stuff is like that, too, in specific: people don't, in my experience, always quite realise exactly how all-encompassingly it affects you when you can't breathe well.

It's not just that you can't breathe, and you're uncomfortable. It's that you're scared, that you're weighing every movement between 'do I want to do that enough to have to sit down again for five minutes or more afterwards' and 'if I say I don't want to do it, will they think I'm just being lazy?'

And for me, the fact it completely fuzzes out my brain: the last major bout I had, it was taking me 3+ hours to do the email+Usenet reading that normally was taking me about 45 minutes (without a notable increase in the actual number of posts or anything.)

One thing I think helps, and that I try to do these days is "My lungs are bothering me. That means I can't do X." Sometimes it's a long list of X. Sometimes it's a "I'm going to go have a bath right now, and see if that helps." (Getting into the bathroom, which is low on allergens, and also making sure that any of them are off my body often helps in my case.)

But being clear about what I can do, what I can do if it *really* needs to be done, but I need recovery time after, and what I really can't do helps people be helpful and not surprised. Not that you need to share it publically, but it's the kind of thing I share privately to my partners, and anyone else who might need to know for a specific reason.

[johnpalmer.livejournal.com]

Lungs important?

It was surprising, really, when it took me nearly five minutes to realize *why* I was told in first aid training to always check breathing first, give breaths if needed, *THEN* check pulse.

It doesn't *MATTER* if the heart is pumping, if all it has is unoxygenated blood to send around.

(It's actually more complicated than that - but the point is, it was easy to think "heart, heartbeat" and forget the importance of breathing.)

[patgreene.livejournal.com]

I hope you're feeling much better... when you said it was asthma-like and you were on nebulizer treatments every four hours I thought it might be serious, but I wasn't sure.

Struggling to breathe is one of the worst sensations in the world. Makes you wonder how anyone can take up smoking, or anything with potential lung diseases down the road.

Believe me, I understand the concern about appearing whiny. : >

[elisem.livejournal.com]

The stuff that "goes without saying" is often the stuff we take for granted because it's always in the picture, for us, and our eye just automatically subtracts it since it's, you know, a given. And that is often the stuff that other people don't know about unless we tell them, or unless they have some prior experience and practice at recognizing it (or noticing the place it would likely be, and then asking about it).

Subtracting that stuff from the picture in certain ways can be such a big coping tool. Got side effects, though. This'd be one of them. Tricky to balance it all, in my experience.

Although it's true that I don't want to be a drama queen, obviously I need to give more careful attention to the possibility that when things are bad for me I may not be communicating everything I intend to communicate.

Hey. Might I defend the word "drama" for a moment?

Is it possible that what you want to avoid is melodrama, rather than drama? Because, you know, not being able to breathe is basically pretty fucking dramatic, and yet that's what you got stuck having to deal with. And you did deal.

Sometimes life just is dramatic, and then we get to do the best we can dealing with the dramatic stuff. But that's a lot different than rolling in it, which maybe is what you meant by "drama queen". Anyhow, what I wanted to say is that I can't see you rolling in it, or using it as, oh, I dunno, a flag or a stick or a trumpet or a soundtrack-enhancer. And I think, sometimes, that some of us might mistake "stating clearly what level of difficulty is occurring" for "being a drama queen," and I think that's a costly mistake. So yeah, some people freak out at reading or hearing how difficult something is, and some other people mistake it for being a drama queen, but I think it boils down to this:

Even if you keep those folks totally happy by avoiding saying how difficult something is, what's the result? You get to deal with the difficult thing in isolation. Doesn't sound like much of a prize to me. Although I understand how sometimes it can be a valid tradeoff to avoid dealing with somebody else's freakout about one's own difficulties. (I should go make a post to dot.cattiness about that. Something on the order of, "Oh, thank you so much for your reaction to my difficulties. Yes, I would much rather take care of you than attend to the stuff going on with myself, so please, make as much fuss about your shock and dismay as you can, thanks. Comforting you in this time of {your} need is such a nice distraction, and I wasn't doing anything important anyway.")

Eh. Sorry, I rant. But there's something important in there, and I'm gonna leave it in hopes that it's useful, and I think you are an excellent Rivka and I hope that you can find a way of making, um, basic status reports that feels right to you and conveys the useful information to the outside world.

And if you figure it out, I hope you post about it, because I'd maybe learn something personally useful as well, besides being happy for you and glad to hear how it went, and stuff like that.

There's a whole nother discussion on disincentives to communicate this kind of stuff, too, but eh, well, tired for now. I send you well wishes, and also good-information-giving wishes too.

[elisem.livejournal.com]

It occurs to me that I should state clearly that the hypothetical bad-reacting person in my post does not resemble anybody currently in your life as far as I know. I'd have a hard time imagining any of the folks that care about you reacting like that.

It seemed to, er, go without saying. So I figured I'd better come back and say it. Kind of a theme, there.

[mittelbar.livejournal.com]

Drama or melodrama, it can be stressful to hear, all the time, about the truth of someone else's chronic distress. It can be hard to maintain belief and sympathy, or, if you do, to maintain distance and equilibrium.

Therefore, I think the result of keeping the dramatic reports low-key is, sometimes, people around you who aren't stressed out or distant. I know it's upsetting to have people freak out about one's problems -- this has sometimes kept me from seeking help when I needed it. However, I think it's unfair to expect people to just go along with perfect equanimity, no matter what you present them with, or for how long you do it.

So. Er. I guess I'm just saying I think Rivka's underreporting, if not perhaps ideal, is perfectly rational.

[elisem.livejournal.com]

Well, sure.

(Not sure where "perfect equanimity" got in there, though.)

[dedoc.livejournal.com]

*meditating* Having heard you shortly before you went to the ED, I don't know if it was underreporting *in this case*. I honestly don't quite think you were entirely "there"... not delirious, but disassociated? Which, as has been pointed out, sustained respiratory difficulties can do very, VERY well.

Can't speak to other times, other issues...

[rivka.livejournal.com]

I honestly don't quite think you were entirely "there"... not delirious, but disassociated?

This seems like a good observation. I really didn't feel entirely aware - it was kind of a distant, dampened, underwater feeling. I brought Misha to my doctor's appointment on Friday because I had no confidence that I would be able to understand and remember what was said to me - and rightfully so. Might've also made me an ineffective communicator, yeah.

[janetmiles.livejournal.com]

I think I figured it was bad but you were being neutral about it: you Went To The ER. In my idiolect, that means "it's bad".

Also, when I read this post, especially the first sentence, I thought, "Oh, shit, that's how I felt (except for the breathing treatments, since there wasn't anything wrong with my lungs, just the surrounding infrastructure) for the first several weeks after my accident last year! She's *really* been sick!"

[aiglet.livejournal.com]

I find that it's very hard for me to accurately report on how sick I actually am, so it's not surprising to me that you were underreporting. Most of the "being sick is bad/horrid/nasty/annoying/frustrating/scary" stuff is in my head, so it winds up sort of being this problem between "Well, if I say what's going on physically, I wind up underreporting because a lot of the problem is the mental strain of the physical nastiness" and "If I say what's going on in my head, people will think I'm over-reacting because they're not here and don't understand how terrible I feel."

Maybe that extends into other things -- sometimes it's hard to know what's going to be taken as overreaction and what's going to be seen as a perfectly reasonable (if not rational) response to a difficult situation.

::wafts gently scented steam at you instead of a hug::

[therealjae.livejournal.com]

That had occurred to me. (Mostly because it looked kind of familiar.) Is there anything to do about it, though? Because when I get like that, it's not *just* about not wanting to sound whiny to other people, but also about not wanting to sound whiny to *me*. You can tell yourself that you're probably underreporting and then turn up the drama a bit to make it more consistent with real life, but if you're anything like me, you'll kind of hate yourself for it, and that'll make you feel worse when you're already feeling bad. Sometimes, going back after the fact and setting the record straight might be just the thing to do.

In any case, I'm glad you're feeling distant enough from feeling that horrible that you're able to recognize the underreporting. That's the best part. :-)

-J

[ruth-lawrence.livejournal.com]

For what it's worth I knew how sick you were. I'm a severe asthmatic, though.

I've found people tend to have some trouble understanding serious difficulty in breathing and the effect of being that way quite a while, but explaining can seem, I dunno, like whining, to me, too.

I'm glad you have a good doctor.