Invisible Illness Awareness Week, post 3

[nilchance]

I've revised my earlier goal to posting 5 times this week. Yes, the linkspam counts.



For those of you who haven't heard of it: secondary gain is the premise that an individual with chronic pain or illness is receiving some kind of positive stimulus when they're ill or hurting, and in response to that gain they continue to model the behavior. This makes it difficult to detach from the pain, and therefore you either a) continue to delude yourself that you're feeling pain after the injury has healed, or b) you're faking. It makes sense from a behaviorist standpoint. If you feed the rat when they press the lever, the rat is going to learn to press it again.

Secondary gain is a concept that comes up often when you ask a certain kind of psychologist or therapist, or even physician, about chronic pain. If a patient continues to say that they're hurting after they've been "treated" to the expert's satisfaction, then the fault is not with the treatment. It's with the patient. "Well," they say, a sly glint in their eyes, "you're enjoying all this attention, aren't you? You're liking the time off work, the high of the pain medication, the way you're excused from chores. You don't want to give up your pain, do you?"

There hasn't been a study, but I'm curious how often the patients dismissed with "secondary gain" are female. The anecdotes about hearing it from doctors tend to skew towards women. It's a prejudice based on the old days of female hysteria, fainting couches and rest cures. Obviously the woman's pain isn't real. Obviously they just can't handle the same stimuli men deal with all the time. Obviously, if the pills aren't working, they like the doctor's attention. It isn't enough that women struggle to be diagnosed with illnesses like CFS or fibromyalgia; once they're diagnosed, then they're told that they're exaggerating how bad the illness really is. After all, they've been given all the latest medications, they should be better.

And it's not just the doctors. One's friends and family may not call it "secondary gain", but they may refer to the chores you don't do, the work you miss, the accommodations you're given. "Oh, I wish I was on disability so I could stay in bed all day."

The problem with secondary gain is the assumption that there's a fixed point where the individual "should" be healed. This may make sense if you're talking about a broken leg, but there are many conditions that react strangely to medication, if they react at all.

I'd trade every day off, every chore I don't have to do, every bit of attention if it meant I didn't wake up in pain. That I didn't lose words anymore. That I remembered as clearly as I did at 18. That I could walk for miles and go for hours without rest. I'd give it all back if I could, but I can't. Most people with chronic illness and invisible disabilities would tell you the exact same thing. Any apparent benefit should be weighed against the cost, most of which you can't see at first glance. And the fact that some (male, able-bodied) theorist came up with the idea that I'm creating my own hell for a little attention and a paternal pat on the fucking head? Yeah. That pisses me off.

In conclusion: dude, if you want to try "secondary gain" out on me? Try living my goddamn life and see if any of your "benefits" are worth it.

Comments

[quiet000001.livejournal.com]

Even many conditions which DO respond to treatment often don't do so completely, or are chronic and you can't stay on the treatment forever. (For example, immuno-suppressants work pretty well for me with my arthritis- BUT they don't take away existing skeletal damage, only soft-tissue inflammation, so I still have pain in my worst joints, AND you cannot stay on them indefinitely, because they are hard on other body parts.)

Interestingly, my dad did not really "get" what I was talking about re: my pain levels until he developed osteoarthritis in a finger. (Not that I think he was consciously thinking "oh, she gets stuff out of saying she's in pain" but I do think there's some resentment- kind of understandably- when you see someone who is not visibly impaired lying around in bed all day or what have you.) Now that he's had arthritis in his finger, however, he's suddenly "I cannot imagine having that type of pain ALL OVER."

[dine.livejournal.com]

*applauds like whoa*

I wasn't aware of the official title, but this theory infuriates me no end.

[frightened.livejournal.com]

AHAHAHAHAHAHA. Yeah, cos I live to spend time fighting people I don't like for treatment I don't get. Love it. Every second.

I think, actually, my shrinks subscribe to this myth. They do not understand that I HATE them all, I would punch them all in the face if I could do it without getting in trouble, and I'd buy my drugs off the internet if I could. They seem to think I enjoy arguing with them. They shouldn't flatter themselves.

Edited to add: like the first commenter says, I think my mum finally understood it when she got a stomach ulcer that would not die. The restricted activities, the constant medication, the explaining to doctors that no, you're not better, and yes, you realise this is probably due to some failing on your part. She gave me a lot less crap about my mental illness after that.

[cream-fudge.livejournal.com]

"you're enjoying all this attention, aren't you? You're liking the time off work, the high of the pain medication, the way you're excused from chores. You don't want to give up your pain, do you?"
Gosh, some people can really be assholes! Its so much easier to just blame you when they don't manage to help you instead of trying to find out what else could be done! That's so digusting really.

Obviously, if the pills aren't working, they like the doctor's attention. It isn't enough that women struggle to be diagnosed with illnesses like CFS or fibromyalgia; once they're diagnosed, then they're told that they're exaggerating how bad the illness really is. After all, they've been given all the latest medications, they should be better.
Oh woman that's outraging! There are so many studies about pain and gender that point out how different men and women react on medication. The pills just do not cause the same effects on men and women. That's a state of fact and I just can't believe they still hang on to this damn old Freud crap!
I think the main problem is that most people tend to take the easy way. It's harder to actually accept someone others pain with all it's unfairness than to blame the victim itself and just assume that things can't be that bad.
I don't say that the concept of secondary gain is completely false. I think it has its authorification, but that doesn't mean they can just use it whenever they have no answer to your patients medical conditions or when people can't understand because they just have no idea.
Things like that really make me go apeshit!
As if it isn't enough already to be ill and in pain. I'm really sorry you have to deal with such crap.

[spazzer-mctwich.livejournal.com]

wow....some people are dicks. I'm sorry someone said that to you.

interesting side note, hysteria comes from the Greek word hyster, meaning of the womb. so suffering from hysteria or being hysterical literally means suffer of the condition of being female. who says science is heterosexitly skewed?

[malamysza.livejournal.com]

Very well said. Who the heck is to know how you feel better than yourself?! It's true that some people do like attention when they are sick, like to know someone really cares about them, enough to even put up with their moaning and demands (though from my experience - they are more often men than women). But how many people would actually fake illness just to get it?! Really, the benefits of being sick usually don't quite compare with all the drawbacks.
And it's really easy for those who are fit and healthy to say that you are exaggerating, you don't hurt like you claim you do etc. How can they know? Are they so empathic, can they somehow sink in your body, feel the way you do? Huh...