Gamma Research tie-in? Alert Frost, Villette.

[eschatonic]

I don't know why people view a psychosomatic illness as fake.

It's not just psychosomatic illnesses, any invisible disability faces exactly the same problems with disbelief. I think to a large degree its a failure in empathy/imagination. I had to get incredibly graphic in my description of the effects of chronic pain before I got any of my managers to accept that it was real and disruptive. With less revealing descriptions you could see the disbelief slipping onto their faces -- 'I couldn't live like that, therefore you can't be, therefore you're a liar'.

<snip>...look at the history of PTSD and the journey from 'lack of moral fibre' to 'battle fatigue' to serious psychological condition over the course of a century and a host of different wars.

You know, the day after I wrote that I had a conversation with a co-worker about soldiers coming back with PTSD and how that correlates with the number of homeless/crazy/alcoholic Vietnam vets in the US, and he was startlingly disbelieving. He said something like, "well, when you're in a gunfight, you do what you have to do and you kill people, whatever." I pointed out that that attitude won't stop you from having constant nightmares about it afterwards, and that just because the twelve-year-old was pointing a gun at you doesn't mean you won't feel horrible about killing a child, and that yeah, actually, chronic panic attacks can prevent you from holding down a job, and he said, "huh."

So you're right. It's a failure of both imagination and empathy. People who've never had problems have major difficulty imagining a situation in which they would have to rearrange their entire life to accommodate something they don't want and didn't ask for and can't get rid of.

This goes double for anything invisible or psychiatric or whatever, because if you can't see it it's not really there. Maybe because people conflate every mental problem with either "lack of moral fiber" or "crazy", where crazy is always and only schizophrenia: permanent and incurable and hopeless, making you a danger to yourself and others, a death of the self which is only marginally better than actually dying*. If you're not hearing voices telling you to burn things, you're making it up.

*Heh. Just like the Anomaly.

[DavidG]

He said something like, "well, when you're in a gunfight, you do what you have to do and you kill people, whatever."

He's not even right in that. There's a statistic which was famously first publicised by S L A Marshall in 'Men Against Fire' after WWII (there's some major questions over the validity of Marshall's research, but other research supports the actual number) that something like 75% of frontline infantry were never able to bring themselves to fire directly at an enemy soldier. They'd fire nearby, to try and keep his head down or whatever, but they couldn't actually bring themselves to take the kill-shot. The US Army and other militaries changed the training to try and increase the percentage, but I think the assumption is still that most kills will come from a small proportion of the force.

So you're right. It's a failure of both imagination and empathy. People who've never had problems have major difficulty imagining a situation in which they would have to rearrange their entire life to accommodate something they don't want and didn't ask for and can't get rid of.

And that's when we get people saying "I'd rather die than be disabled", or the even more disturbing "you'd be better off dead" and why I'm personally opposed to legalising euthanasia even though I think there's a compelling argument that a mature society should allow it.

Maybe because people conflate every mental problem with either "lack of moral fiber" or "crazy", where crazy is always and only schizophrenia: permanent and incurable and hopeless, making you a danger to yourself and others, a death of the self which is only marginally better than actually dying*. If you're not hearing voices telling you to burn things, you're making it up.

Society being delusional about being delusional -- you couldn't make this stuff up!

[eschatonic]

Yeah, well ... the thing about schizophrenia is, based on the suicide/attempted suicide rate of people who have it, uh. Some of these may be caused by delusions, or the presence of additional disorders such as depression and/or bipolar disorder, but in a distressing number of cases, people who actually have it do seem to think death would be better.

It does seem to be a hellish disease to try to live with. And if you're in the 50-60% of sufferers for whom there's really nothing anybody can do, you've just got to hope someone benevolent will take care of you for the rest of your life.

psychotic disorders: still beating out bone cancer, neurodegenerative diseases, and getting hit by a bus for the #1 spot on my DO NOT WANT list.

[Felicia1066]

So you're right. It's a failure of both imagination and empathy. People who've never had problems have major difficulty imagining a situation in which they would have to rearrange their entire life to accommodate something they don't want and didn't ask for and can't get rid of.

And that's when we get people saying "I'd rather die than be disabled", or the even more disturbing "you'd be better off dead" and why I'm personally opposed to legalising euthanasia even though I think there's a compelling argument that a mature society should allow it.

I remember a guy a used to work with, real fitness freak. He once told me he and his girlfriend - another fitness freak - had a deal that if one of them ended up in a wheelchair or similar, the other would be automatically freed of any and all commitment to their relationship. "Because who wants to be trapped like that?" he asked earnestly.

I wanted to hit him so bad.

[glinda_w]

Just back from my sailing trip with all the symptoms of an aggravated C-spine and something definitely wrong with my knee (tearing sensations are never a good sign). Maybe putting myself in situations where I'm thrown across the cabin from one side to the other isn't ideal, but sometimes you have to push the limits just to make life worthwhile.

Yes, that, exactly. (Though sometimes those limits seem to move, and what was possible a few months ago now triggers a major flare. Have to keep trying anyway, because every once in a while the limits will move in the other direction, and something becomes possible again.)

(Aside: I found out a couple of summers ago that I'm still - or more correctly, again - very good at sight-reading new piano music. Mostly I play things I already know, but last month I acquired a lovely, lovely book that has a piano version of the Faure "Pavane" in it. Pure joy.)

[Lioness]

I agree that sometimes you have to look at people with reservations, but lots of people go for decades without a clear diagnosis and have to settle on a working one that allows them to deal with all of the everyday functions that force them to provide a label for other people.

I'm pretty sharply aware of that myself. It's been... hm, coming up on forty-three years since the first occurrence of the Thing That Does Not Get Called Lupus. (God only knows what it actually is. Maybe if we succeed in getting me to a combined consult at Mayo I'll find out.)

No, the people that really bug the snot out of me are the ones who decide that they have fibromyalgia because they feel a bit tired, and then want to tell me all about it, and about how my life would be so much easier if I only did what they did, or who assume that they know how mine works and what levels of pain and difficulty I deal with, based on their self-assigned diagnosis which is based on a few lines of something they read or heard on the news once, plus a lot of imagination.

I dunno. Maybe I just hate everybody nowadays and have no compassion. It's a possibility. But swear to god, I'm not talking about people who are finding a diagnosis after being ignored by the medical community. I'm talking about what feel to me like, god help us, wannabes.

(I probably do hate everybody, though. Yeah, clinical depression just got added to the list a little while back. Sigh.)

[Emma Bull]

If you can't say anything good about people, honey, come sit over here by me. I have yarn and onagiri.

[Lioness]

If you can't say anything good about people, honey, come sit over here by me. I have yarn and onagiri.

*comes over and snuggles into a nest of yarn, and accepts onagiri gratefully*

[glinda_w]

No, the people that really bug the snot out of me are the ones who decide that they have fibromyalgia because they feel a bit tired, and then want to tell me all about it, and about how my life would be so much easier if I only did what they did, or who assume that they know how mine works and what levels of pain and difficulty I deal with, based on their self-assigned diagnosis which is based on a few lines of something they read or heard on the news once, plus a lot of imagination.

Oh yes. It was even worse before I added fibro to the mix; the label "chronic fatigue syndrome" seems to really attract comments of the "I get tired too" sort. And before that, and still, migraines - I think I've heard every single hurtful "if you only did x or tried y or changed your attitude" remark that it's possible make.

Brings out my inner "Hulk SMASH" - or would if I just had that much energy. *wry*

I dunno. Maybe I just hate everybody nowadays and have no compassion. It's a possibility. But swear to god, I'm not talking about people who are finding a diagnosis after being ignored by the medical community. I'm talking about what feel to me like, god help us, wannabes.

Oh, no. I can't even imagine "no compassion" and you existing in the same universe. I do think that we can be socialized to be "nice" to people, when being taught firm boundaries and what we do and do not owe to others would have been far more useful. (Did that make sense?)

(I probably do hate everybody, though. Yeah, clinical depression just got added to the list a little while back. Sigh.)

Much sympathy. (That's one of mine, too. Am going to be doing therapist roulette (mine left the clinic and she's not on the preferred provider list, and there's no way I can pay the $65 per visit that's above what Medicare allows). Also medication roulette, which scares me even more. Am hoping to talk whoever into just giving me daily Ativan; yes, I know it's one of those old -zepam meds that can cause dependency, but at this point? That argument goes down about as well with me as not giving a terminal cancer patient morphine because they might become addicted. *more growling*)

[DavidG]

the label "chronic fatigue syndrome" seems to really attract comments of the "I get tired too" sort.

There were a couple of really good (if possibly triggery) posts on CFS and the problems with other people's attitudes to it as part of Blogging Against Disablism Day this last weekend (one of the reasons I haven't been around, I had a couple of posts to put out myself and I've been working my way through the other contributions).

http://www.ilmestykset.net/2011/05/paivita-sanavarastosi-update-your-vocabulary/ (scroll down to get to the English version)
and
http://chronicallycrafted.blogspot.com/2011/05/belated-badd-post-mobility-scooters-and.html

[trinker]

If you can't say anything good about people, honey, come sit over here by me. I have yarn and onagiri.

Onigiri?  We have onigiri fans here?

(pulls out a selection with red shiso & salt; plain with soy-infused bonito flakes; wakame bits and sesame seeds; and plain with salmon flakes inside. Oh, and some with the canonical umeboshi centers. Pile of crackling crisp nori strips on the side.)

[HebrewRose]

Onigiri is (are?) my food I've only read about, never tried, and want so much...

[trinker]

Onigiri is (are?) my food I've only read about, never tried, and want so much...

....where does one read about onigiri?

[MadGastronomer]

Onigiri is (are?) my food I've only read about, never tried, and want so much...

They're so easy, though! Here, have some instructions.

And I'm an onigiri fan, too. (I know, you're so surprised.)

[Lioness]

If you can't say anything good about people, honey, come sit over here by me. I have yarn and onagiri.

Onigiri?  We have onigiri fans here?

(pulls out a selection with red shiso & salt; plain with soy-infused bonito flakes; wakame bits and sesame seeds; and plain with salmon flakes inside. Oh, and some with the canonical umeboshi centers. Pile of crackling crisp nori strips on the side.)

Kombu onigiri are my favorite. Had some for lunch the other day.