Thanks for writing this. I didn't even know it needed to be said until I read it.
2010-06-10 09:54 pm (UTC)
On the flip side, when people say to me, "Oh, I'm so glad I don't have that problem" - which, by the way, is not a particularly nice thing to say - I want to tell them that they very well might and they ought to check. And I run the risk of being overly emphatic and seeing my own condition in other people when it isn't there. Because I said the exact same thing once, and I turned out to be wrong.
Yah, I can totally understand why people are glad not to have vertigo--I'm glad they don't have vertigo--and yet it seems a bit tactless to say it to me quite like that. It's not like my physics major, where it seemed tactless but at least it was something I had chosen for myself so I could be blamed for it if they felt blame was necessary.
But we also have had several runs of, "Here is a less easily detected/widely known about thing that we have found out about, and perhaps you should look into it," around here, particularly in family groupings. People don't always agree to. But I know the impulse.
I particularly notice this with a type of cause-seeking (or, to put it less charitably, blaming) that sort of makes sense with a broken leg model but not so much with other things. For most people, leg bones don't just fracture on their own: even if someone has a predisposition to more-fragile bones, there's usually some physical trauma that casued a particular breakage. So it's reasonable (possibly overly-nosy, but reasonable) to ask how a break happened, because there's usually an answer like, "Skiing accident" or "car accident" or "tripped on the cat" or "slipped on the ice" or "attempted to create my own backyard high-wire act" or something.
(I won't say always, because there may very well be disorders that cause spontaneous bone breaks, but for most broken bones, there's a fairly clear proximate cause for the break.)
That isn't true, for the most part, of things like heart disease, or cancer, or depression, or autism, or whatever, but people insist on treating it that way. Did you eat the wrong foods, or did you not eat enough of the right foods? Were you too sedentary, or did you do the wrong kind of exercise? Were you stressed, or did you fail to have sufficient life goals to motivate you? And so on, and so on. That there must be a clear cause: you got X because you did Y, or you failed to do Z, or possibly because someone else did Q or failed to do R around you at the right, or wrong, time.
While I see this with other health issues I have, one of the simplest to explain is the fact that I have terrible teeth despite having great dental hygiene. I spent years brushing three times a day and flossing religiously and using all manner of fluoride supplement and avoiding soda and so on, and still having everyone from the dentist on down assume that there wasn't any possible way that I just had bad teeth: I must have done something bad to them, or failed to do something good to them. Until finally I found the dentist that I have clung to ever since, who noted quite reasonably that there's a genetic component to dental health, and some people just get unlucky. But the idea that All Mouths Start Off Perfect So You Must Have Done Something To Screw This One Up was so prevalent that it took years to get there.
One of the most common ways of expressing health concern is not the neutral, "What happened?" but the accusatory, "What did you do?" This is often even skewed in its intonation: "WHAT did YOU DO?"
And one of the things it means is, "What did you do that I can avoid doing so that I can dodge this thing that happened to you?"
"What did you screw up that I can get right so that I can be okay where you are not okay?"
Even, "What happened?" assumes that there is an event, something you can point at. Even if it's that a bolt of lightning or a meteorite hit you while you were sitting innocently in your living room reading, something happened, and there is before, and there is after. Whereas with, say, food allergies, or depression, or many other things people I know deal with, there is less the bolt from the blue--even if we stipulate that it is the blameless bolt--and more the gradual awareness that not all is well, or at least not as well as it could be.
Story-seeking is a very human urge. It's just not always a very useful or appropriate one.
My particular favorite is the accusatory: "Do you think stress brought this on?"
Because, of course, I purposefully had a time-consuming child, and I purposefully like to worry about money all the time because it's so fun for me, and I purposefully have family-of-origin issues, and I just ran out and courted sleep-deprivation brought on my slumlords and and and . . .
My mother worked in a fertility clinic for years (in the 1980s), and every one of her patients was constantly hearing, "Oh, just relax, it's stress." She to me once, "That's why no one gets pregnant during wars! or during an economic depression! or in horrible relationships! Thank goodness someone noticed!"
That is some quality field research those folks are doing. For Science.
I know one person who actually did get pregnant after years of infertility, just a year or two after adopting a child. I think the only thing worse than "you should just relax! or adopt a baby, then you'll get pregnant!" would be hearing, "See, it worked!"
Particularly if the phrase "real daughter" is used somewhere in there.
Yah, people who use "real daughter/son/child" are really invited to depart the premises. Honestly.
I get told a lot that I'll have no problem getting pregnant since adopting my son, apparently because infertility is just a form of hysteria.
YES, the stress of having to LISTEN TO QUESTIONS LIKE THAT ONE NEXT PLEASE.
Corollary: "What did I do?" In my case, why -- despite years of reasonable physical activity and almost never wearing high heels -- am I the one who gets a torn ligament and plantar fascitis and collapsing arches and all the rest of it, while these other women swan around in their stilettos without problems?
Which is false in so many ways, because a) I have no idea what problems any given woman may have or not have, and b) I know that swanning around in stilettos frequently leads to a great many problems, most of which I don't have. But it feels so bloody unfair.
There is a House episode I think has a completely brilliant moment, in which a patient who has spent the episode trying to convince the doctors that one particular habit is not to blame for his health problem--even though they associate that habit very strongly with the type of problems he's having--is diagnosed with lung cancer, and he blurts out, "But I don't smoke."
It is so very human.
oh, this a thousand times this
That's an interesting comparison, the broken leg, because it's exactly the one my doctor made when I saw him yesterday. He deals with chronic pain himself, and we were discussing how people who have never had to do so don't understand how exhausting it is, and he said precisely that: "It's not like a broken leg," and for some of the same reasons you give.
(I do, however, have the "advantage" of my age--people expect those my age to be falling apart one way or another!)
This is BRILLIANT!
We have a "blame the victim" mentality in our culture, which is one of its great evils.
We also have a vocabulary such that it's hard to say this without casting somebody as a victim. In no way do I mean to criticize your phrasing, because I'm having extreme difficulty coming up with a way of saying it that doesn't mean the same thing anyway, without being completely clunky about it. "Blame the...problem-having person" is just not pithy.
This is useful. Thank you.
You are brilliant. (And I do hope to be making some posts less under lock about some of it, but am being sensible and waiting till the current work stuff is not on the table before I do.)
2010-06-11 03:47 am (UTC)
This is an entirely fine and completely on-target bit of rant.
In certain cases, it should be engraved on razor-edged steel sheets, folded to maximize the exposed edge, and, um, applied suitably to people who apparently are in need of a truly memorable experience on the topic.
And then when people asked how they got their injury, they would have a ready answer.
I actually just had a broken foot, and it was pretty much Hollywood variety. Having had other ailments that weren't at all Hollywood, I really loved how clear and simple it was,even while hobbling around in a cast. The doctor didn't doubt that I really had it. The cure was not worse than the injury. The insurance didn't question the need for a cast or even X-rays. It didn't make me look weird (I happen to think a purple cast is glamorous). It meant that I got lots of attention and lots of support, because everybody can see a purple cast. And I didn't have to worry about the long-term side effects of the treatment, since they've been splinting broken bones for a while now.
I suffered much more debilitating pain with a nerve injury that went through three doctors before even being diagnosed, and then just when I thought it was well, came back double-strength.I took drugs that could have done some bad stuff to my liver, and I was irritable and cranky for months. And I couldn't go around announcing "I'm in hideous pain, feels like a giant bird has its claws in my neck," so I had to pretend I felt just like everyone else at parties and meetings. The only good aspect was that I did develop faith in the appropriate alternate medicine, and that's helped me with other things since.
When I think about problems like the one you suffer with, I can't begin to imagine the psychological and social problems it creates.
ETA: I know your real point was the blame-seeking that attaches to so much illness. Sorry to hijack with a slightly OT rant of my own, but I'd just been thinking about this.
Edited at 2010-06-11 03:54 am (UTC)
I don't think you were hijacky at all.
The other thing they don't tell you with broken legs is that you'll heal faster (or at all) if you only maintain the proper chirpy attitude.
Wait, fatigue? Heart problems?
Actually I did go to the doctor the first day I had fatigue, largely because Z made me, but also because it's so unusual for me. And I did get seen by a cardiologist and he said my heart was fine. The causes and identity of my mysterious illness of June-August last year remain utterly mysterious. (It appears to have been cured by pu erh tea.)
Yes, fatigue is supposed to be the most common symptom of heart problems among women. Although heart problems are not the most common cause of fatigue among women, not by a long shot. I'm glad they did make sure, and I'm glad the cure was so nice.
Belatedly this occurs to me: the broken leg model is very good for talking to people who are ashamed of their illness, usually emotional/mental stuff. A friend was once deeply depressed and on medication after, get this, her reunited-childhood-sweetheart-fiance left her six weeks before the wedding, then quickly married a much younger woman he'd just met. My friend was so ashamed that she couldn't just power on through!
Of course it is NOT the same thing as a broken leg, but the nice thing is that when your broken leg hurts, of course you get whatever treatment you need, no one says you should use willpower and fortitude instead of a cast and a doctor and painkillers and PT afterward.
Right, that angle of it works well.
Yeah, one of the first questions I get asked about the ankle is "how did you tear the ligament?" You'd think I would know, but I don't. Micro-tears over a period of years? Pressing deeper into neko-ashi dachi
in karate, without realizing I fail at talar glide? That one time the nerve was twinging really badly in my ankle so I asked kniedzw
to help me make the joint pop and maybe that was a really bad idea? All of the above?
And that is
pretty close to a broken-leg injury, as such things go. But no, what happened was I had ankle pain for a little while, and then I had sensations that my foot was not as firmly attached as it should be, and then I went to a doctor -- some untold amount of time after the injury. So it goes.
Thank you for this post.
I find value in this post.
This is a really clear and informative post.
[And I broke my back eight years ago in a suicide attempt; I don't go into the doctor for ANYTHING if I can help it because "attempted suicide" is on my medical notes several times and they act like I should be dead and stop wasting their resources] /wordvomitonastranger.
For all the internet has been good for Rate My Prof this and Amazon Feedback that, it has not yet devised a system for Rate How Doc, Nurse Practitioner And Phlebotomist All Treat Everybody As Humans, No Really, Everybody Dot Com. Which is a pity. And if it had, we'd be dealing with the same guy-with-a-grudge filtering problems as elsewhere, too. Sigh.
I have had no experience with being a patient advocate for someone whose injuries were the result of a suicide attempt, but some of my crappy experiences being a patient advocate in other circumstances lead me to extrapolate and say that I'm truly sorry for what those doctor visits must be like. Ooof.
Oh hell yes. Thanks for this.
Also, re this: fatigue is the main symptom of heart disease in women. Fvck, I am going to Google this, my best friend has some heart dodginess and has been exhausted lately even after naps etc.
I am not usually a proponent of "If even ONE person has been helped by what I've said," because I feel the people who say things like that have not sufficiently considered whether ten people have also been harmed along the way of that one person being helped.
But in this case I am glad to have given you Google fodder, while I hope there is nothing additionally dodgy about your friend's heart.
...in an interesting coincidence, my brother currently has a broken leg.
I hope it heals indistinguishably from a broken leg in a Hollywood movie, but in the department of actually feasible hopes, I hope his physical therapy goes well.
Thanks - a post that I shall probably refer others to in future.
That is perfect. (Jennet on Dreamwidth just linked to this post)