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.
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