Putting the mass in mass hysteria

If you've been following medical news over the past few months, you may have heard about some goings on in a little town called Le Roy. Over 20 high school girls from Le Roy High School have developed Tourette-like tics. The symptoms are severe enough that afflicted students have dropped out of school.

After the New York State Health Department failed to identify any known toxins or infections, a neurologist from the area gave his verdict. From the New York Times:

...it was conversion disorder, he said, which meant the girls were subconsciously converting stress into physical symptoms. And because so many students were afflicted with similar symptoms, it was also considered to be mass psychogenic illness, which is another way of saying mass hysteria.

More recently, neurologist Rosario Trifiletti saw some of the patients and put forth a different theory:

... the girls were suffering from an illness similar to Pandas (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus), a disease in which the immune system alters the neurochemistry of young people suffering from strep infection ... [A] week later, after examining the girls, Trifiletti revealed on “Dr. Drew” that all nine of the girls he tested showed evidence of either strep exposure or exposure to the organism associated with pneumonia.

Dr. Trifiletti's patients have shown dramatic signs of improvement on antibiotics. That proves their illness is physical instead of psychological, right? Not according to skeptics of the PANDAS diagnosis; they say the antibiotics are only working as a placebo.

So who's right?

A few TV clips provide clues. Back in January, before Dr. Trifiletti arrived on the scene, the Today Show ran a couple of segments about Le Roy, interviewing some of the afflicted girls and their parents. There was a lot of footage showing the tics themselves, giving viewers a better idea of what it would be like to live with them.

Segments are here. The first tics begin at 0:22.

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Did you watch?

So did a whole lot of other people. If what's happened to these girls is purely psychological, having nothing to do with area-specific toxins or infections, why hasn't the "mass hysteria" spread across the whole country?

Are there no stressed-out, impressionable teenage girls outside of Le Roy?

Psychosomatic? Or just somatic?

psy·cho·so·mat·ic [sahy-koh-suh-mat-ik, -soh-]
adjective

1. of or pertaining to a physical disorder that is caused by or notably influenced by emotional factors.
   
2. pertaining to or involving both the mind and the body.

Over the years, I've come to doubt the existence of psychosomatic illnesses. People like to believe in them. The idea that our mind can make our body sick is intriguing, and besides, it provides an easy explanation for all those inconvenient ailments that haven't yet been diagnosed, or even discovered. Problem is, nobody seems to have taken the trouble to prove that emotional stress can manifest as physical symptoms.

Every once in a while I get into a debate with somebody about this. While they allow for the possibility that "psychosomatic" is at times shorthand for "I don't know what's wrong with you and don't want to tell you that," they believe that psychologically induced illnesses can happen. They aren't experts in the field or anything; they just think it's intuitively obvious.

For those people, here's a quote on the subject from a licensed clinical psychologist who's been practicing for over 25 years:

Physicians have referred many people to me before they had a diagnosis, even doctors who don’t know what else to do for their patients. ALL of them eventually received a medical diagnosis. That’s right. ALL OF THEM.

(Full post here.)

My opinion on psychosomatic illness can be swayed by real evidence—evidence that amounts to more than "We've ruled out everything else we happen to know about." 'til then, true believers, the burden of proof is on you.

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?

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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?