A moderator is welcome to move this to .... anywhere, but it was so astonishing an article I'm posting it.
I have no clue what to make of this.
Um, we are all VERY unique. And this again brings up the controversy over diagnoses and the DSM.
FROM:
The New York Times
March 22, 2005
At War With Their Bodies, They Seek to Sever Limbs
By ROBIN MARANTZ HENIG
When the legless man drove up on his own to meet Dr. Michael
First for brunch in Brooklyn, it wasn't just to show Dr. First how
independent he could be despite his disability.
It was to show Dr. First that he had finally done it - had finally
managed to get both his legs amputated, even though they had been
perfectly healthy.
Dr. First, a professor of psychiatry at Columbia University, had
gotten to know this man through his investigations of a bizarre and
extremely rare psychiatric condition that he is calling body
integrity identity disorder, or B.I.I.D.
"This is so completely beyond the realm of normal behavior," he
said of the condition, which he estimated afflicts no more than a
few thousand people worldwide. "My first thought when I heard about
it was, Who would think this could go wrong? Who even thought there
was a function that could be broken?"
Dr. First is among a small group of psychologists and psychiatrists
who are trying to define the disorder, understand its origins and
decide whether to include it in the encyclopedic bible of
psychiatry, the Diagnostic and Statistical Manual, or D.S.M., as a
full-fledged disease. At the same time, the disorder is turning
up as a plot device or documentary subject in a handful of films,
plays and television shows.
The idea of having extreme elective surgery, even when it involves
mutilation or removal of healthy tissue, has met at least some
acceptance in cases like sex reassignment, or cosmetic surgery for
those who hate their noses or breasts even when those body parts
are objectively fine.
But an obsessive desire for a limb amputation - one that drives
people to cut off healthy arms and legs - tests the tolerance of
even the most open-minded.
Body integrity identity disorder has led people to injure
themselves with guns or chain saws in desperate efforts to force
surgical amputations. A few have sought out amputations abroad,
including one man who died of gangrene after an elective amputation
in a clinic in Tijuana, Mexico.
The disorder has been known by several names. In 1977, Dr. John
Money, an expert on sexuality at Johns Hopkins University, named it
apotemnophilia (literally, love of amputation). He considered it
a form of paraphilia - that is, a sexual deviation.
In 1997, Dr. Richard Bruno of Englewood Hospital in New Jersey
proposed the name factitious disability disorder, which he
grouped into three types: people who are sexually aroused by
amputees("devotees"), those who use wheelchairs and crutches to
make it seem as if they are amputees ("pretenders") and those who
want to get amputations themselves ("wannabes"). In Dr. Bruno's
taxonomy, those who manage to obtain amputations continue to be
known as wannabes.
In 2000, Dr. Gregg Furth, a New York child psychologist and one of
Dr. Money's co-authors on his 1977 paper, published a book about
the disorder, calling it amputee identity disorder. In addition
to his professional interest in the subject, Dr. Furth had a
personal one: from early childhood, he had wanted to have his right
leg amputated above the knee.
Dr. Furth wrote the book with Dr. Robert Smith, whom he met while
searching for a surgeon who would perform the elective amputation.
When Dr. Furth found him in Scotland, Dr. Smith had already done
two such operations, and he agreed, after consulting with two
psychiatrists, to operate on Dr. Furth. But in 2000 Dr. Smith's
hospital, the Falkirk Royal Infirmary in Glasgow, prohibited any
further procedures of this type. Dr. Furth never received his
amputation.
The newest name, body integrity identity disorder, was first
used by Dr. First of Columbia in the journal Psychological Medicine
in 2004. In that paper, he described the results of a telephone
survey of 52 people with the disorder: 9 of them had amputations
and the rest yearned for it. He chose the name to distinguish the
disorder from paraphilia, psychosis or body dysmorphic disorder
(the false belief that a part of your body is ugly or abnormal).
To Dr. First, the closest analogy was to gender identity
disorder.
"When the first sex reassignment was done in the 1950's, it
generated the same kind of horror" that voluntary amputation does
now, Dr. First said. "Surgeons asked themselves, 'How can I do this
thing to someone that's normal?' The dilemma of the surgeon being
asked to amputate a healthy limb is similar."
Still, the analogy is imperfect. "It's one thing to say someone
wants to go from male to female; they're both normal states," Dr.
First said. "To want to go from a four-limbed person to an amputee
feels more problematic. That idea doesn't compute to regular
people."
Dr. David Spiegel of Stanford said he believed that body integrity
identity disorder sounded closer to either body dysmorphic
disorder or anorexia nervosa, though he added that he had not seen
any patients with the integrity disorder. The connection to
anorexia, he said, is that people with B.I.I.D. "have a clearly
mistaken belief about their bodies."
"It reminds me a little of anorexia nervosa," Dr. Spiegel added,
"where people think they're fat when it's obvious they're not."
No one knows for sure what causes the integrity disorder or how it
can be treated. Dr. J. Mike Bensler and Dr. Douglas S. Paauw of the
University of Washington Medical Center in Seattle, writing in the
Southern Medical Journal in 2003, said it was probably both sexual
and emotional in nature. The condition is at its heart an "erotic
fantasy," they wrote, with two components: "undergoing amputation
of a limb, and subsequently overachieving despite a handicap."
According to Dr. First, people with body integrity identity
disorder are quite specific about how many limbs they want
amputated, and where. The most common is the left leg above the
knee; the least common is a finger or toe. "Some people actually
know the exact spot where they want the amputation," said Dr.
First. "Not just above the knee, but four inches above the
knee."
:shock:
Anything short of that specific site can be insufficient. One man
from Dr. First's sample had a lifelong fixation on being a double
leg amputee. After a shotgun accident, he lost his left arm.
Amazingly, this did nothing to diminish the intensity of the man's
desire to have his legs amputated.
In Dr. First's study, just over half of his subjects had
encountered amputees at a young age, and from that time on, they
were fixated on getting their limbs removed.
"It wasn't so much that I wanted to be an amputee as much as I just
felt like I was not supposed to have my legs," said Dr. First's
brunch companion in a phone interview, which he granted on the
condition of anonymity. The man also was a subject in Dr. First's
study.
"From the earliest days I can remember, as young as 3 or 4 years of
age, I enjoyed playing around using croquet sticks as crutches," he
said. "I enjoyed thinking about what it would be like to be missing
a leg. When we were playing cowboys and Indians, I seemed to be the
person who always got wounded in the leg."
This man said his amputations cured his disorder. But Dr. Spiegel
said most such operations would probably not do away with the
underlying problem. "I don't think the answer is fitting in with
the obsession or delusion," he said.
Dr. Spiegel expressed more faith in psychotherapy, especially
something called response prevention and thought-stopping. "It
involves training the patient to try and block the thought when it
comes up," he said, "and to keep him from trying to act on it."
None of the subjects in Dr. First's study reported being helped by
therapy or medication, but Dr. First said that might be because
they had not received "psychotherapy tailored to this disorder" or
"high sustained doses" of medications used to treat related
conditions like obsessive-compulsive disorder.
He said more research was needed into treatment options and into
whether amputation was an acceptable treatment "as a last resort."
People who have lost limbs to accidents or disease are often
horrified when they learn about healthy people who seek
amputations.
"It's very difficult for people who have been through what they
consider to be a devastating life experience to understand why
anybody would want to mutilate himself in this way," said Paddy
Rossbach, president of the Amputation Coalition of America, an
advocacy and support group. "Especially when so many people are
having tremendous problems with prosthetic fittings, or access to
prostheses, and are living with pain every day of their lives."
Mrs. Rossbach, who has been missing a leg since childhood, said
that some amputees are angry at people with body integrity identity
disorder because they believe that the condition "is really
minimizing what they themselves have been through."
According to Dr. First, people with the disorder are basically
normal. "They have families," he said. "They hold all kinds of
jobs, doctors and lawyers and professors. They're not screwed-up
people apart from this. You could spend an evening with them and
never have the slightest clue."
But people with serious mental illnesses, even psychoses, often
look normal on the surface, Dr. Spiegel said. Still, the surface
can mask some profound problems. "It's often the case that people
with this kind of delusion would pass a mental status screen," he
said. "They can do abstract thinking, they're not disoriented, they
look pretty good to the outside world as long as you don't trip
over their delusion."
Yet many with the disorder would go to extreme measures to get rid
of the limb they consider extraneous.
In May 1998, the urge drove one man to a California surgeon who had
lost his license more than 20 years earlier for several botched
attempts at sex reassignment surgery. At a clinic in Tijuana, the
surgeon, John Ronald Brown, 77, cut off the left leg of Philip
Bondy, 79, of New York, who had paid him $10,000. Then Mr. Brown
sent Mr. Bondy to a motel in a run-down section of San Diego to
recover on his own.
Two days later, Mr. Bondy was dead of gangrene, and Mr. Brown was
charged with second-degree murder. During the trial, newspaper
reports said that Mr. Bondy had sought the operation to satisfy a
"sexual craving." Mr. Brown was found guilty in October 1999 and
sentenced to 15 years to life in prison.
Mr. Bondy was not alone in his desperation. Among the body
integrity identity disorder sufferers in the documentary "Whole" by
Melody Gilbert, broadcast on the Sundance Channel in May 2003, is a
Florida man who shot his own leg so it would be amputated in the
emergency room, and a man from Liverpool, England, who packed his
leg in dry ice for the same reason. The man who froze his leg
referred to the resulting amputation as "body correction surgery."
The condition is slowly making its way into popular culture.
At the New York International Fringe Festival last summer, an award
for best overall production went to "Armless," a play about a
middle-aged suburbanite with the disorder. The playwright, Kyle
Jarrow, said his goal was to explore "the line between gross and
spooky and funny and poignant."
In November, an episode of "CSI: New York" featured a man with the
disorder who bled to death after he tried to saw off his leg. And
last month, a screening was held in the East Village of
"Pretender's Dance," a short film by Tom Keefe about a young
choreographer and her boyfriend who wanted amputation.
Dr. Smith, the Scottish surgeon who removed the legs of two men
before his hospital forced him to stop, is trying to get the
disorder formally recognized so that the amputations can be covered
by the National Health Service.
"The Hippocratic oath says first do your patients no harm," he said
in the film "Whole." But maybe the real harm, he said, is to refuse
to treat such a patient, "leaving him in a state of permanent
mental torment," when all it would take for him "to live a
satisfied and happy life" would be to amputate.
Dr. Smith's American co-author, Dr. Furth, is trying to get body
integrity identity disorder added to the D.S.M., the textbook
compiled by the American Psychiatric Association that lists all
mental disorders considered distinct, pathological and worthy of
reimbursement by health insurance companies.
Dr. First of Columbia is on the board of editors for the next
edition of the textbook. Even though he is one of the few
psychiatrists who studies the disorder, he still has not decided
whether it should be included. Putting the disorder into the manual
could generate research interest into its origin and possible
treatment, he said.
But, he added, "the D.S.M. already is a very big book."
"And as far as clinical utility," Dr. First said, "the thicker it
gets, the less useful it gets."
And while the disorder is genuine, he said, he has to recognize
that it may be too rare for mention in a book that is already
buckling under the weight of its inclusiveness.
Copyright 2005 The New York Times Company
Dreamer is speechless. Any thoughts on this one? :shock:
I have no clue what to make of this.
Um, we are all VERY unique. And this again brings up the controversy over diagnoses and the DSM.
FROM:
The New York Times
March 22, 2005
At War With Their Bodies, They Seek to Sever Limbs
By ROBIN MARANTZ HENIG
When the legless man drove up on his own to meet Dr. Michael
First for brunch in Brooklyn, it wasn't just to show Dr. First how
independent he could be despite his disability.
It was to show Dr. First that he had finally done it - had finally
managed to get both his legs amputated, even though they had been
perfectly healthy.
Dr. First, a professor of psychiatry at Columbia University, had
gotten to know this man through his investigations of a bizarre and
extremely rare psychiatric condition that he is calling body
integrity identity disorder, or B.I.I.D.
"This is so completely beyond the realm of normal behavior," he
said of the condition, which he estimated afflicts no more than a
few thousand people worldwide. "My first thought when I heard about
it was, Who would think this could go wrong? Who even thought there
was a function that could be broken?"
Dr. First is among a small group of psychologists and psychiatrists
who are trying to define the disorder, understand its origins and
decide whether to include it in the encyclopedic bible of
psychiatry, the Diagnostic and Statistical Manual, or D.S.M., as a
full-fledged disease. At the same time, the disorder is turning
up as a plot device or documentary subject in a handful of films,
plays and television shows.
The idea of having extreme elective surgery, even when it involves
mutilation or removal of healthy tissue, has met at least some
acceptance in cases like sex reassignment, or cosmetic surgery for
those who hate their noses or breasts even when those body parts
are objectively fine.
But an obsessive desire for a limb amputation - one that drives
people to cut off healthy arms and legs - tests the tolerance of
even the most open-minded.
Body integrity identity disorder has led people to injure
themselves with guns or chain saws in desperate efforts to force
surgical amputations. A few have sought out amputations abroad,
including one man who died of gangrene after an elective amputation
in a clinic in Tijuana, Mexico.
The disorder has been known by several names. In 1977, Dr. John
Money, an expert on sexuality at Johns Hopkins University, named it
apotemnophilia (literally, love of amputation). He considered it
a form of paraphilia - that is, a sexual deviation.
In 1997, Dr. Richard Bruno of Englewood Hospital in New Jersey
proposed the name factitious disability disorder, which he
grouped into three types: people who are sexually aroused by
amputees("devotees"), those who use wheelchairs and crutches to
make it seem as if they are amputees ("pretenders") and those who
want to get amputations themselves ("wannabes"). In Dr. Bruno's
taxonomy, those who manage to obtain amputations continue to be
known as wannabes.
In 2000, Dr. Gregg Furth, a New York child psychologist and one of
Dr. Money's co-authors on his 1977 paper, published a book about
the disorder, calling it amputee identity disorder. In addition
to his professional interest in the subject, Dr. Furth had a
personal one: from early childhood, he had wanted to have his right
leg amputated above the knee.
Dr. Furth wrote the book with Dr. Robert Smith, whom he met while
searching for a surgeon who would perform the elective amputation.
When Dr. Furth found him in Scotland, Dr. Smith had already done
two such operations, and he agreed, after consulting with two
psychiatrists, to operate on Dr. Furth. But in 2000 Dr. Smith's
hospital, the Falkirk Royal Infirmary in Glasgow, prohibited any
further procedures of this type. Dr. Furth never received his
amputation.
The newest name, body integrity identity disorder, was first
used by Dr. First of Columbia in the journal Psychological Medicine
in 2004. In that paper, he described the results of a telephone
survey of 52 people with the disorder: 9 of them had amputations
and the rest yearned for it. He chose the name to distinguish the
disorder from paraphilia, psychosis or body dysmorphic disorder
(the false belief that a part of your body is ugly or abnormal).
To Dr. First, the closest analogy was to gender identity
disorder.
"When the first sex reassignment was done in the 1950's, it
generated the same kind of horror" that voluntary amputation does
now, Dr. First said. "Surgeons asked themselves, 'How can I do this
thing to someone that's normal?' The dilemma of the surgeon being
asked to amputate a healthy limb is similar."
Still, the analogy is imperfect. "It's one thing to say someone
wants to go from male to female; they're both normal states," Dr.
First said. "To want to go from a four-limbed person to an amputee
feels more problematic. That idea doesn't compute to regular
people."
Dr. David Spiegel of Stanford said he believed that body integrity
identity disorder sounded closer to either body dysmorphic
disorder or anorexia nervosa, though he added that he had not seen
any patients with the integrity disorder. The connection to
anorexia, he said, is that people with B.I.I.D. "have a clearly
mistaken belief about their bodies."
"It reminds me a little of anorexia nervosa," Dr. Spiegel added,
"where people think they're fat when it's obvious they're not."
No one knows for sure what causes the integrity disorder or how it
can be treated. Dr. J. Mike Bensler and Dr. Douglas S. Paauw of the
University of Washington Medical Center in Seattle, writing in the
Southern Medical Journal in 2003, said it was probably both sexual
and emotional in nature. The condition is at its heart an "erotic
fantasy," they wrote, with two components: "undergoing amputation
of a limb, and subsequently overachieving despite a handicap."
According to Dr. First, people with body integrity identity
disorder are quite specific about how many limbs they want
amputated, and where. The most common is the left leg above the
knee; the least common is a finger or toe. "Some people actually
know the exact spot where they want the amputation," said Dr.
First. "Not just above the knee, but four inches above the
knee."
:shock:
Anything short of that specific site can be insufficient. One man
from Dr. First's sample had a lifelong fixation on being a double
leg amputee. After a shotgun accident, he lost his left arm.
Amazingly, this did nothing to diminish the intensity of the man's
desire to have his legs amputated.
In Dr. First's study, just over half of his subjects had
encountered amputees at a young age, and from that time on, they
were fixated on getting their limbs removed.
"It wasn't so much that I wanted to be an amputee as much as I just
felt like I was not supposed to have my legs," said Dr. First's
brunch companion in a phone interview, which he granted on the
condition of anonymity. The man also was a subject in Dr. First's
study.
"From the earliest days I can remember, as young as 3 or 4 years of
age, I enjoyed playing around using croquet sticks as crutches," he
said. "I enjoyed thinking about what it would be like to be missing
a leg. When we were playing cowboys and Indians, I seemed to be the
person who always got wounded in the leg."
This man said his amputations cured his disorder. But Dr. Spiegel
said most such operations would probably not do away with the
underlying problem. "I don't think the answer is fitting in with
the obsession or delusion," he said.
Dr. Spiegel expressed more faith in psychotherapy, especially
something called response prevention and thought-stopping. "It
involves training the patient to try and block the thought when it
comes up," he said, "and to keep him from trying to act on it."
None of the subjects in Dr. First's study reported being helped by
therapy or medication, but Dr. First said that might be because
they had not received "psychotherapy tailored to this disorder" or
"high sustained doses" of medications used to treat related
conditions like obsessive-compulsive disorder.
He said more research was needed into treatment options and into
whether amputation was an acceptable treatment "as a last resort."
People who have lost limbs to accidents or disease are often
horrified when they learn about healthy people who seek
amputations.
"It's very difficult for people who have been through what they
consider to be a devastating life experience to understand why
anybody would want to mutilate himself in this way," said Paddy
Rossbach, president of the Amputation Coalition of America, an
advocacy and support group. "Especially when so many people are
having tremendous problems with prosthetic fittings, or access to
prostheses, and are living with pain every day of their lives."
Mrs. Rossbach, who has been missing a leg since childhood, said
that some amputees are angry at people with body integrity identity
disorder because they believe that the condition "is really
minimizing what they themselves have been through."
According to Dr. First, people with the disorder are basically
normal. "They have families," he said. "They hold all kinds of
jobs, doctors and lawyers and professors. They're not screwed-up
people apart from this. You could spend an evening with them and
never have the slightest clue."
But people with serious mental illnesses, even psychoses, often
look normal on the surface, Dr. Spiegel said. Still, the surface
can mask some profound problems. "It's often the case that people
with this kind of delusion would pass a mental status screen," he
said. "They can do abstract thinking, they're not disoriented, they
look pretty good to the outside world as long as you don't trip
over their delusion."
Yet many with the disorder would go to extreme measures to get rid
of the limb they consider extraneous.
In May 1998, the urge drove one man to a California surgeon who had
lost his license more than 20 years earlier for several botched
attempts at sex reassignment surgery. At a clinic in Tijuana, the
surgeon, John Ronald Brown, 77, cut off the left leg of Philip
Bondy, 79, of New York, who had paid him $10,000. Then Mr. Brown
sent Mr. Bondy to a motel in a run-down section of San Diego to
recover on his own.
Two days later, Mr. Bondy was dead of gangrene, and Mr. Brown was
charged with second-degree murder. During the trial, newspaper
reports said that Mr. Bondy had sought the operation to satisfy a
"sexual craving." Mr. Brown was found guilty in October 1999 and
sentenced to 15 years to life in prison.
Mr. Bondy was not alone in his desperation. Among the body
integrity identity disorder sufferers in the documentary "Whole" by
Melody Gilbert, broadcast on the Sundance Channel in May 2003, is a
Florida man who shot his own leg so it would be amputated in the
emergency room, and a man from Liverpool, England, who packed his
leg in dry ice for the same reason. The man who froze his leg
referred to the resulting amputation as "body correction surgery."
The condition is slowly making its way into popular culture.
At the New York International Fringe Festival last summer, an award
for best overall production went to "Armless," a play about a
middle-aged suburbanite with the disorder. The playwright, Kyle
Jarrow, said his goal was to explore "the line between gross and
spooky and funny and poignant."
In November, an episode of "CSI: New York" featured a man with the
disorder who bled to death after he tried to saw off his leg. And
last month, a screening was held in the East Village of
"Pretender's Dance," a short film by Tom Keefe about a young
choreographer and her boyfriend who wanted amputation.
Dr. Smith, the Scottish surgeon who removed the legs of two men
before his hospital forced him to stop, is trying to get the
disorder formally recognized so that the amputations can be covered
by the National Health Service.
"The Hippocratic oath says first do your patients no harm," he said
in the film "Whole." But maybe the real harm, he said, is to refuse
to treat such a patient, "leaving him in a state of permanent
mental torment," when all it would take for him "to live a
satisfied and happy life" would be to amputate.
Dr. Smith's American co-author, Dr. Furth, is trying to get body
integrity identity disorder added to the D.S.M., the textbook
compiled by the American Psychiatric Association that lists all
mental disorders considered distinct, pathological and worthy of
reimbursement by health insurance companies.
Dr. First of Columbia is on the board of editors for the next
edition of the textbook. Even though he is one of the few
psychiatrists who studies the disorder, he still has not decided
whether it should be included. Putting the disorder into the manual
could generate research interest into its origin and possible
treatment, he said.
But, he added, "the D.S.M. already is a very big book."
"And as far as clinical utility," Dr. First said, "the thicker it
gets, the less useful it gets."
And while the disorder is genuine, he said, he has to recognize
that it may be too rare for mention in a book that is already
buckling under the weight of its inclusiveness.
Copyright 2005 The New York Times Company
Dreamer is speechless. Any thoughts on this one? :shock:
