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Invisible Illness Awareness Week, post 3
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.
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.
no subject
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."