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Chronic Health Thing #712 - Barnstorming on an Invisible Segway [entries|archive|friends|userinfo]
Marissa Lingen

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Chronic Health Thing #712 [Sep. 12th, 2011|11:15 pm]
Marissa Lingen
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I've been on every side of the issue I'm about to talk about. I am not saying that I only do one of the things here.

But there's this thing that happens when you have a chronic health problem. I expect it happens for other chronic problems as well. And that thing is: your friends will sometimes ask your closer friends/family members how you are doing.

And that's great! They're expressing concern, they're finding out the parameters of whether there's stuff they can help with...it's all good.

Where it gets less good is when they ask these other people and don't talk to you.

I'm not talking about the situation where someone is asking after you to be polite and express concern for the person who is closer to you, and only indirectly for you. This will happen. "How is your aunt?" is a polite social query even for those who don't know your aunt.

And I totally get why this happens. There are lots of good reasons. Sometimes Friend A runs into Closer Person B in person a lot more often than they run into you, or else they have an ongoing e-mail thread that provides opportunity. Sometimes Friend A really, truly, sincerely doesn't want to bug you. Figures you have enough on your plate. Doesn't want to make every conversation about your health problems.

This works much better if Friend A then goes on to talk to you about other things, at least occasionally. Like, within a span of months would be good.

I know everybody's busy. I know people don't really know how to talk about chronic health problems. And I know that it's sometimes hard to remember that you haven't actually connected with someone when, well, there's lj! There's Facebook! There's Twitter and Google+ and who knows what-all else, and how can you say that a friendship has drifted apart when you were reading about what the other person had for lunch just yesterday? But friendships do drift. And one of the ways they drift is when we let someone shift into a de facto "friend of a friend" role without meaning to. Friendships ebb and flow--I'm not trying to say they don't. But I'm also saying that it's fairly easy to fail to notice that they're ebbing and then ebbing some more until there isn't much friendship there.

Sometimes we have to accept that that's who we are to someone, a friend of a friend, a cordial acquaintance, someone we used to be friends with, someone we used to send a Christmas card to. But when it happens because of a chronic illness--because someone "doesn't want to be a bother" or "doesn't know what to say," even, beyond the usual "I have less time and energy because of this illness" direct stuff--that can be pretty frustrating. And it can be pretty lonely. And having Closer Person B to give you a list of the people who totally mean you well does not always help if you never hear from a single one of those people.

I guess this is a place to say that things had gotten better for me for awhile, and now they're getting worse again, and we're dealing with it as best we can, with appropriate specialists and consultations called in. And things that I'm not eager to talk about in public, I am a lot more willing to talk about on e-mail when people make it clear that they care--but I'm not going to hunt people down and insist that they hear it all. I am not at a point where posting this sort of thing to my lj is likely to be the order of the day (and no, that's not because it's on my FB or G+). So go ahead and ask a closer friend of mine if you know one well. But talk to me too if you want to. I'm still here.

[User Picture]From: shweta_narayan
2011-09-13 04:53 am (UTC)
But when it happens because of a chronic illness--because someone "doesn't want to be a bother" or "doesn't know what to say," even, beyond the usual "I have less time and energy because of this illness" direct stuff--that can be pretty frustrating. And it can be pretty lonely.

This so much.

fwiw I care. Lack of email on my end has been because every time I try to deal with anything beyond immediate-urgent, the piles of balls-I-have-dropped-this-year make me want to hide under the bed. Which is a bad reason. But I might as well be honest about it; maybe that'll even get me to get over it.
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[User Picture]From: mrissa
2011-09-13 11:42 am (UTC)
It's a frustrating reason, certainly, but I think a completely understandable one--and not one that's always amenable to just trying harder. Hang in there.
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[User Picture]From: cathshaffer
2011-09-13 05:11 am (UTC)
I'm sorry to hear things have gotten worse lately. That is very discouraging.
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[User Picture]From: tiger_spot
2011-09-13 05:12 am (UTC)
Oh, crumbs. That is a shame, and I hope the specialists and so forth get the trajectory turned back around the right direction again.
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[User Picture]From: miz_hatbox
2011-09-13 05:58 am (UTC)
Oof, Mris. I'm so sorry that things are worse. This is not what you needed!

I hope they get better really soon. (gives stern warning look to the Universe, to clearly convey "Quit messing with my friends. Now.")

Edited at 2011-09-13 05:59 am (UTC)
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[User Picture]From: glinda_w
2011-09-13 06:41 am (UTC)
Oh. That hurts.

I'm not a close enough friend to you to be asking questions of you *or* your other friends whom I know.

But yeah. It's difficult, on all sides.

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From: thoughtdancer
2011-09-13 08:31 am (UTC)
How frustrating!

But also how nice? I've very few friends. Very few. No one I know goes asking after me.

At least, the friendships didn't become enemies, or disinterested strangers. This shows both compassion and decency. This is something I don't know how to do.

So, I'm also jealous. I need to learn. Still.

But how frustrating!
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[User Picture]From: wild_irises
2011-09-13 03:15 pm (UTC)
I don't know you, but this comment makes me want to say, "How are you?"
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From: thoughtdancer
2011-09-13 03:54 pm (UTC)
Actually, pretty well. :-) I just have IRL social skills that rival third graders for competence. *sigh*

I'm also a very strange person for where I live and what I am like. (NYC born and bred, but out in the midwest; agnostic/atheist in high Christian city; long-term unemployed PhD; married, no kids, SF/F-loving fat gamer-woman; science fantasy novelist wannabe who needs readers for chapters. I don't have good social skills and I am next to impossible to pigeon-hole. It makes life a bit weird. Very interesting, but very weird.)
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[User Picture]From: fidelioscabinet
2011-09-13 01:00 pm (UTC)
I'm sorry you're back in the barrel again, after managing to get to the point where you could at least sit on top of it.
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[User Picture]From: sartorias
2011-09-13 01:06 pm (UTC)
oh I hope that somebody will be able to turn around that trajectory quickly.
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[User Picture]From: aedifica
2011-09-13 02:13 pm (UTC)
Oh argh.

I personally don't tend to ask *anyone* about your health, not because I don't care but because I don't feel like I'm close enough to you for it not to count as prying. But I do wish you well.
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[User Picture]From: mrissa
2011-09-13 02:49 pm (UTC)
You are so from here. As a person who has been invited to my home etc., you are closer than many of the people who consider themselves close enough (and do not get smacked down for it!). But I do appreciate the inclination against prying; I have that one myself.
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[User Picture]From: aedifica
2011-09-13 02:58 pm (UTC)
You are so from here.

Hee! I will take that as a compliment, and one that feels particularly good since I was just thinking the other day about some of the subtleties I tend to overlook in Scandesotan. :-)
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[User Picture]From: apis_mellifera
2011-09-13 02:17 pm (UTC)
I'm so sorry to hear that things have gotten worse lately. That sucks.
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[User Picture]From: carbonel
2011-09-13 02:35 pm (UTC)
I'm really sorry things are going in the wrong direction.

Also, would you be available to get together for lunch sometime in October? (I think my September is starting to look awfully full already.)
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[User Picture]From: mrissa
2011-09-13 02:50 pm (UTC)
I really have no idea what to think of October, so I'm afraid we'll have to talk about this later.
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[User Picture]From: wild_irises
2011-09-13 03:14 pm (UTC)
I have to wonder if this post is about me, because in the last two weeks I did ask a closer friend of yours about you, in a context where said closer friend was telling me something else about you.

For me, the indirection was about three things that I can identify: the opportunity of the moment (because we were talking about you); the vague sense that I had that you were being quiet on the topic because things were worse; and my confidence that I can't navigate Scandosotan. Oh, and that while I like you very much, I wouldn't call us "friends."

I will try to remember to ask on e-mail now and again, because I really do care. In return, will you try to let me know if I am too intrusive?
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[User Picture]From: mrissa
2011-09-13 03:18 pm (UTC)
Oh! No, it was not you; whoever you were talking to did not pass along your concern. (Now I'm wondering what else you were saying about me, though!)

But yes, I will both answer kindly intentioned e-mails when I have the energy to do so and sometimes answer them with, "I'm afraid that's a little personal/raw/difficult for me to talk about right now, but I really appreciate your concern."

And also: thank you for demonstrating understanding that "person towards whom I have generally positive feelings" and "friend" are not the same. I always feel like I am being chilly and unpleasant if I say, "Oh, I'm not friends with so-and-so," but sometimes I mean just that: we have a warmish acquaintance, but I don't want to represent myself as the person's confidante etc.
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[User Picture]From: wild_irises
2011-09-13 03:33 pm (UTC)
Well, the person was elisem, for whom you are doing things I would do if I was there, and we were sharing our appreciation of what you do.

And now I know what is right for you and will endeavor to remember.

Life is rich and short (like good dough), but I would like to be friends with you if circumstances went that way.
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[User Picture]From: mrissa
2011-09-13 04:54 pm (UTC)
Thank you. We will see what circumstance brings us, but that was a very kind thing to say whatever does come.
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[User Picture]From: tiger_spot
2011-09-13 05:24 pm (UTC)
I wish there were more generally-understood words for the range of positive acquaintances. They would be so handy.
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[User Picture]From: pnkrokhockeymom
2011-09-13 03:28 pm (UTC)
I'm sorry things have been worse lately. Pfft on that. Pfft all over that.

I have been an absentee LJ/email buddy to everyone lately, because I am having an annoying and selfish midlife crisis. As a result, I am simultaneously too busy and doing none of the things I should be or want to. We're trying to work through that in a way that allows me to be a diligent person and be in more contact with the people I would like to be. I'm sorry about that: you are always there for me when I'm all amok.

Also, I have to find a weekend to bring Pup to the Twin Cities in order to visit campus. I will email you when we get that figured out.
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[User Picture]From: mrissa
2011-09-13 05:09 pm (UTC)
I am sorry you've had reasons to be all amok.

I think part of what happens here is that I don't go all amok to very many people, compared to what some others do. I am more likely to batten down the hatches. So unless you are one of, oh, six or eight people...two of whom changed my diapers...you're not likely to be receiving the signals that I'm at sixes and sevens. And sometimes not even then.

As for Puppy's college visits, yes, do let me know. I was talking to Tim about them and about various liberal arts colleges in the area, and in addition to what we've already talked about, we do have a solid sort of feeling about Mac. They are the sort of weird one enjoys in college students. "It's like someone told them the Walton family was their biggest benefactor," said Tim, "and they said, oh, Jo and Sasha? Great! and proceeded to behave accordingly."
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[User Picture]From: columbina
2011-09-13 04:10 pm (UTC)
Debating whether this is better sent in email, but I think on the whole there are sound reasons to put it here:

I tend to comment on anything BUT your health, not because I am scared to discuss the Elephant In The Room, but because I assume that it so permeates and dominates every facet of your life that you would usually prefer the opportunity to talk about ANYTHING else, just to have a conversation that isn't about That Again.

On the other hand, I also know that sometimes That Again is EXACTLY what you need to talk about, and that even stoic Scandasotans sometimes have to vent somewhere to somebody about this thing that is eating their existence. For those times, I'm certainly prepared to be a venting sink (and let's be honest, that's really all I can do) ... but I HAVE to let you make the first move there, I have to wait for you to say "Is it okay if I vent for a while?" and I say "Of course, yes, absolutely." Otherwise there's simply too much risk that I'm 1) prying and/or 2) making things worse by dredging mud that shouldn't be dredged at that time.

Anyway, the answer is always "Of course, yes, absolutely." For the record. But it's tricky, because I don't feel I can start, and I realize that often you don't have the energy to.
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[User Picture]From: mrissa
2011-09-13 05:12 pm (UTC)
I commend to your attention one of my entry's middle paragraphs here: "This works much better if Friend A then goes on to talk to you about other things, at least occasionally. Like, within a span of months would be good." I was not talking about you when I wrote it. But.

I am trying with the Tumblrness, but the very thing you want about it--it's not a very conversational mode--makes it difficult to, um. Converse.
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[User Picture]From: columbina
2011-09-13 06:16 pm (UTC)
Yup, I've pretty much given up on the conversational aspects of Tumblr. Tumblr itself makes that too hard. I do still read email, but there's very little incentive at this time to check it more than once a week or so.

I'm still looking for the right venue. Many of my friends are in the same boat. Some thought Google+ would be it, but that's not looking promising.
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[User Picture]From: chinders
2011-09-13 10:58 pm (UTC)
Augh. I hope you start feeling better again soon.
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