Strange Doings in New York

It is a very strange story. It makes no sense. And yet, something is going on. Several girls at a New York school were, within a short period of time, all exhibiting strange tics, exaggerated movements, and verbal outbursts, all apparently uncontrollable. The symptoms are very Tourette like. It has now impacted 16 people.

That a cluster of people would come down with similar symptoms is not unlikely, but having them all manifest so quickly with no detectable cause is. Tourette's Syndrome is relatively rare, and tends to have a genetic factor. It is not Tourette's, but could it have been induced by some exposure to a toxin?

It is possible, but unlikely. No toxin has been detected so far that they might have all been exposed to. There was a toxic chemical spill in the area many years ago, but it makes little sense that we would see a cluster of victims now, in such a limited group- fourteen teenage girls and a single female adult and a single teenage boy. Usually symptoms develop at different rates for different people, based on exposure and their own biology.

So what is going on? The general consensus so far is that it is probably what is known as a conversion disorder. This has often though inaccurately been referred to as mass hysteria.

Hysteria comes from the Greek word for uterus. In Victorian times, it was one of the most common diagnosis for women. It was believed to have been caused by a disturbance in the uterus, thus only affecting women. The common and surprising treatment during the supposedly repressive Victorian days was hysterical paroxysm. Although this treatment has long since been abandoned by doctors, it was simple and inexpensive. The doctor would manually massage the pelvic area until the woman was brought to orgasm. Amazingly, she did feel better afterward. It was a simple treatment, but it could be a tiring one for the doctor. This lead to the creation of the steam powered vibrator, and then the electric vibrator, both of which were originally designed not for sore backs and shoulders, but to help prevent doctor's sore hands.

Mass hysteria, though, is different from hysteria in that it can effect both men and women. It is a very real thing. Groups can become very suggestible.

A conversion disorder is different from mass hysteria, though. While the root may be psychological in a conversion disorder, that does not make it any less real. To the one suffering, they really have no control. They are not faking it. There may be no brain or nerve damage, but the problem is very real. And it can spread to other people. It is not common, but there are many documented cases.

How this all works we do not yet understand. Nor does this diagnosis completely rule out an infectious disease or a toxin that may have been a trigger.

Despite the reality of conversion disorder, most of us with fibromyalgia will react very negatively to this diagnosis. We have been through the frustration of having endless tests done where the doctors find nothing. Since this is a syndrome that primarily impacts women, it has been often written off as simply psychological. Women wanted attention, or were malingerers. Despite the tremendous pain and disability, doctors tended to dismiss their complaints. Many still do, and there are doctors who don't believe that it is a real condition despite the mounting medical evidence.

I believe that fibromyalgia is as poorly understood as it is because it largely impacts women. I have seen first hand how doctors dismiss anything they do not immediately understand with women patients as just being “all in your head”. 

The history of women’s healthcare is a sad one. Sexism has been a big factor. Much of our medical research has focused on men. We actually know less about how many diseases effect women than we do men, because most of the studies have focused on men.

In my next posting I'll write about my first hand experience with how women are treated with difficult to diagnose conditions, and talk about the long journey to diagnosis for fibromyalgia patients.