Wednesday, January 12, 2011

Secondary gains

I had a good friend in college. Call her Liz.

Liz was an artistic type, very bright, with a flair for the dramatic. She made no secret of her emotional state, whatever it happened to be at the time. Happy events made her bounce off the walls with joy. Setbacks were cause for much handwringing and gnashing of teeth.

At some point during our freshman year, Liz developed an odd health problem. I don't remember all the details, but one of the symptoms involved numbness down one side of her body. Understandably concerned, she went to see a doctor.

After her appointment she reported the doctor's diagnosis: her symptoms were psychosomatic. She seemed content with this explanation. I accepted it as well, and life continued on as normal.

Fast-forward a month or so. My high school friend Larry visited, and he and Liz were hanging out in my dorm room. Liz made some mention of physical discomfort. Larry offered her a backrub. She said yes, and Larry went to work. After about a minute, Liz cheerfully informed him that she couldn't feel anything he was doing. Larry kneaded harder. No dice.

Later, after Liz had left the room, Larry turned to me, baffled.

"I should have been hurting her," he said.

For the first time, I gave some actual thought to Liz's diagnosis. I had a solid layman's understanding of what psychosomatic disorders were. I knew that the symptoms, though caused by emotional disturbances, were supposed to feel real—that the patients weren't faking. Still ... If Liz's "psychosomatic" numbness was so real that my big, very strong friend couldn't penetrate it, what did psychosomatic mean?

* * *

Lily Cooper recently wrote a very interesting article about the history of psychosomatic illnesses, aka somatoform disorders, aka conversion disorders, aka hysteria. If you have ever given credence to the idea that emotions can manifest as physical symptoms, give it a read. A couple of choice excerpts:

The idea that physical illnesses were manifestations of feelings and thoughts started with Charcot in the 1880's ... For instance, a man knocked unconscious for 5 days by a carriage was unable to speak, walk or remember the accident when he regained consciousness. Charcot diagnosed him as being hysterical because of the psychological trauma of the event.
and ...
After brain scans of patients suffering from chronic fatigue syndrome were shown to an expert scan reader in 1984, he said the punctate lesions he saw looked like the scans of AIDS patients. Months later the CDC issued its verdict. The town of Incline Village NV [where the epidemic had occurred] was suffering from mass hysteria.

From multiple sclerosis (once dismissed as "hysterical paralysis") to myalgic encephalomyelitis (still derisively referred to as "chronic fatigue syndrome"), the psychologizing of biomedical diseases has a long, if not exactly proud history. The question is why. In the absence of a mechanism—an explanation for how people can think themselves sick—where is the evidence?

* * *

Mental health professionals who believe psychosomatic illnesses exist make the case that patients benefit from secondary gains. Here's a rundown from Wendy Beall, who titles herself "Change Meister":
When you call in sick to work and escape the whole onerous day without being accused of deliberately shirking your duties, you are enjoying a secondary gain of illness ... When someone waits on you tenderly and takes care of all the chores as you languish in bed, you are enjoying a secondary gain. When a child escapes a day at school by claiming a stomachache or sore throat, this is a secondary gain—and often escalates to blatant manipulation when paired with an overly protective parent.

... if you are not getting well despite attempts to heal, you ought to consider how your symptoms benefit you. Remember, we all use illness to get what we believe we can't get comfortably by direct means.

So apparently if you have unexplained symptoms and benefit from them in any way, shape, or form, the conclusion is inescapable. Your disease must be all in your head.

How scientific.

* * *

Patients with psychologized chronic illnesses will tell you that the advantages of being sick are highly overrated. They miss their careers. They miss the financial stability work gave them. Rather than attracting sympathy, they discover that most of their friends disbelieve and disappear. This suggests that if we are to accept secondary gains as indirect evidence, we should consider the other side as well. What are the secondary gains of assigning a psychological diagnosis to a biomedical disease?

If patients are to blame for their own suffering ...
  • We don't have to feel sorry for them. We can give a knowing smile and say they need to get over themselves. Self-righteous indignation and condescending pity are far less distressing than compassion.

  • We don't have to entertain notions of an unjust universe, or be angry that sometimes bad things happen to good people.

  • Physicians who can't immediately identify a disease don't have to admit it. Instead they can tell their patients it doesn't really exist.

  • Insurance companies that don't cover mental illnesses can deny claims.

* * *

Why did I so readily accept my friend Liz's diagnosis all those years ago? As I mentioned, Liz was artistic, highly emotional, and dramatic. She had the requisite troubled childhood. On some level I'd assumed that Liz was the kind of person who would get a psychosomatic illness. The explanation made sense, and things that made sense made me happy.

Only years later did it occur to me to wonder. How long did Liz sit in that doctor's office before he made his assessment? Did he put any real time and effort into exploring other possibilities?

Or did it simply make his job easier to assume she was the type?


Laurel said...

Excellent points, Susan. I think you are sadly correct about the secondary gains people get in blaming the patient. It takes away the uncertainty, the sense of failure of a doctor not having the answers, and makes people feel like it could certainly never happen to them.

I think there is that sense of blaming the patient sometimes even for well-recognized conditions like cancer. I read a book once by a doctor who noted that when a patient doesn't respond to chemotherapy, they often say "the patient failed to respond to treatment," not that the treatment failed them.

Regarding doctor's being quick to dismiss ME/CFS, I have many stories I could choose from to illustrate that in my own experience. The one that comes to mind right now is one from many years ago (when I could still actually go to doctor appointments). This doctor, upon hearing I had CFS, immediately said, "I don't do CFS. I don't believe in it, I don't treat it, and I don't fill out disability forms for it." I watched her write "major depressive disorder" on my chart within 5 minutes of walking into the room. She did not ask me a single question about my medical history. When I told her I wasn't depressed, she actually said "I don't believe you." She then went on to tell me that I was causing undo harm and stress to my family, as though I were some kind of misbehaving young child. It was one of the worst experiences I've ever had with a doctor.

Your friend (and those of us in the ME/CFS community) are lucky to have you as an advocate.

Anonymous said...

Wendy Beall lacks the capacity for critical thinking if she equates calling in sick for one day of work to the loss of one's whole career, lasting for years or even decades.

She, like the doctors who can't say "I don't know", are part of the "don't confuse me with the facts - my mind's made up" cult.
-Lilly Cooper

DeppityBob said...

I think there is some insecurity in some doctors, manifesting itself as arrogance, hastiness, and such. A lot of people build a wall of denial around themselves so that they don't have to admit their shortcomings, and that can be true even for the gifted doctor. Perhaps for some, it's a personal affront that a disease is difficult to diagnose. They can't accept that their learning has limits, so they transfer the limits to the patient. That way, it's the patient's fault for being sick, not the doctor's for being unable to find the cause.

Susan, your blog was very well-written. I'm going to share this with people. Especially good was your turn of "secondary gains" on its head. You could be a lobbyist for the ME/CFS community if you wanted.

Kirk said...

Here's the thing, though. All other evidence for or against a physical cause aside, that's not the right way to look at it. IF it is a mental disorder, and not a physical one, then they don't need to be getting anything out of it for it to in their head.

And the waters are further muddied because there ARE people who claim MCS who most certainly don't have any sort of actual physical MCS. An anecdotal example: I knew someone, once upon a time (almost 20 years ago), who insisted that she had MCS. She'd list off a litany of everyday things that she couldn't tolerate, all the while puffing on the noxious chemical factory that is a cigarette. The contradiction of claiming chemical sensitivity to a zillion things, while being a heavy smoker never occured to her. I don't know what she got out of her assertion of MCS. Attention, maybe? But it's pretty implausible that she actually had any sort of physical disorder.

People like that muddy the waters when considering whether there is a real, common hidden physical cause of other cases of CF/MCS.

Brian McDonald said...

Doctors get two things out of declaring a mystery illness to be psychosomatic: First, doctors get to rest easy knowing that this condition that put their medical/scientific abilities into question is a psychological one, and so they couldn't be expected to 'fix' it. Second, doctors ...get to say 'not my problem' and not have to deal with the sickies. I think a lot of doctors don't really WANT to cure anything hard. They just want to cure easy stuff and feel good about it.

Besides, how do you bill insurance companies for a made-up disease?

Anonymous said...

Excellent blog, Susan, as is Lily's blog and, even better, her links to Richard Webster's Freud site, if you ever need the solid scholarly backing and citations for these arguments.

This Webster link, in particular, is priceless (partially a review of Hillary Johnson):

But also wanted to say this terrible week: we hope you are all ok down there in Tucson. We send you prayers from around the world in your grieving.

Jeff Shattuck said...

"if you are not getting well despite attempts to heal, you ought to consider how your symptoms benefit you. Remember, we all use illness to get what we believe we can't get comfortably by direct means."

Stuff like this is said by people who have never been truly ill. I could go on, but it's late and I'm tired.

Great post.

cinderkeys said...

Great comments, everyone. I don't know if the people crying "secondary gains" lack the capacity for critical thought, or if they simply choose not to engage it. Either way, I don't think it's possible to reach them through logical arguments. The only thing we can do is reach those who assume "in their heads" is correct because the so-called experts said so. If these ideas lose public support, the "experts" will quietly find something else to do.

Kirk: Yeah, I'm pretty sure your chain-smoking friend wasn't chemically sensitive. I wonder what the heck her answer was to people who pointed out the contradiction. It's not like everybody was going to be too polite to ask. :)

Anyway, hypochondria is a real thing too -- an anxiety disorder. Many hypochondriacs believe they have cancer. That doesn't mean cancer doesn't exist. And while you (Kirk) understand that, it seems to elude the medical doctors who ignore the avalanche of evidence that something is physically wrong with the patients they can't immediately diagnose.

Anonymous said...

Are you still in touch with Liz? Do you know what happened to her?

cinderkeys said...

Still in touch. I don't think anyone ever found out what was causing the numbness, and eventually it went away on its own, though she's dealt with some other health issues. Perhaps because I've since met other people who have been badly treated by doctors, I suspect I'm more up in arms about the incident now than she is. :)

Anonymous said...

Brilliant blog, thanks for these insights.

Justin said...