Body Integrity Identity Disorder (BIID): How Satisfied are Successful Wannabes

Abstract

Background: People suffering from Body Integrity Identity Disorder feel the intensive wish for an amputation of one limb or another kind of handicap. Due to ethic and juristic reasons, the desired surgery is difficult to realize. In spite of these problems several patients were able to achieve the wished amputation, in most cases with a cash-paid surgery in a less developed country. Our study examined whether these patients are sufficient with the amputation in the long run. Methods: We found 21 operated BIID-people (18 men, 3 woman; 27 - 73 years old, average 53.5 years) and interviewed them with a questionnaire. Here, we asked e.g. about quality of life and mental states before and after their surgery, the integration into the social environment, changes of their own dreams, the desire for further surgery and the presence of phantom sensations. Results: Psychological
therapy, psychopharmacological medication, and relaxation techniques have had little effect and sometimes increased the desire. None of the patients regretted the surgery and a change for the better was seen in almost all areas of life. There were several problems regarding the quality of life, but they were estimated as bearable in contrast to the happiness to have fulfilled the wish. Many told their closer family members the true reasons of their amputation. Phantom limb feelings were reported, what contradicts the theory of BIID as a limb not embedded in the brain’s body-schema. After the operation most of the participants dreamed of themselves with an amputated body. The majority of the interviewee did not want further restrictions. Conclusions: These results point to the fact that the often assumed negative consequences of an amputation or further surgery do not occur. Thus, a realization of the wish of a person affected by BIID could be a possible form of therapy for patients, when other therapies have shown no effects

Full text

Psychology and Behavioral Sciences
2014; 3(6): 222-232
Published online December 16, 2014 (http://www.sciencepublishinggroup.com/j/pbs)
doi: 10.11648/j.pbs.20140306.17
ISSN: 2328-7837 (Print); ISSN: 2328-7845 (Online)
Body integrity identity disorder (BIID): How satisfied are
successful wannabes
Sarah Noll
1, 2, *
, Erich Kasten
1, 2
1
Institute of Psychology, Hildesheim, Germany; Dept. Of Neuropsychology, Hamburg, Germany
2
University of Hildesheim, Hildesheim, Germany; Medical School Hamburg, Hamburg, Germany
Email address:
SarahNoll@gmx.de (S. Noll), EriKasten@aol.com (E. Kasten)
To cite this article:
Sarah Noll, Erich Kasten. Body Integrity Identity Disorder (BIID): How Satisfied are Successful Wannabes. Psychology and Behavioral
Sciences. Vol. 3, No. 6, 2014, pp. 222-232. doi: 10.11648/j.pbs.20140306.17
Abstract:
Background: People suffering from Body Integrity Identity Disorder feel the intensive wish for an amputation of one
limb or another kind of handicap. Due to ethic and juristic reasons, the desired surgery is difficult to realize. In spite of these
problems several patients were able to achieve the wished amputation, in most cases with a cash-paid surgery in a less developed
country. Our study examined whether these patients are sufficient with the amputation in the long run. Methods: We found 21
operated BIID-people (18 men, 3 woman; 27 - 73 years old, average 53.5 years) and interviewed them with a questionnaire. Here,
we asked e.g. about quality of life and mental states before and after their surgery, the integration into the social environment,
changes of their own dreams, the desire for further surgery and the presence of phantom sensations. Results: Psychological
therapy, psychopharmacological medication, and relaxation techniques have had little effect and sometimes increased the desire.
None of the patients regretted the surgery and a change for the better was seen in almost all areas of life. There were several
problems regarding the quality of life, but they were estimated as bearable in contrast to the happiness to have fulfilled the wish.
Many told their closer family members the true reasons of their amputation. Phantom limb feelings were reported, what
contradicts the theory of BIID as a limb not embedded in the brain’s body-schema. After the operation most of the participants
dreamed of themselves with an amputated body. The majority of the interviewee did not want further restrictions. Conclusions:
These results point to the fact that the often assumed negative consequences of an amputation or further surgery do not occur.
Thus, a realization of the wish of a person affected by BIID could be a possible form of therapy for patients, when other therapies
have shown no effects.
Keywords:
Body Integrity Identity Disorder, BIID, Body Incongruence Disorder, Apotemnophilia, Amputation, Xenomelia,
Phantom Limb Pain
1. Introduction
A person suffering from Body Integrity Identity Disorder
(BIID) has an entire body, but the perception of the own
identity is that of an amputated or otherwise impaired person
and they feel a strong urge for an amputation or another kind
of operation [see e.g. 1, 2, 3, 4, 5, 6, 7, 8, 9, 10]. They named
themselves as “wannabes” (for: want to be). These persons
are absolutely aware about the absurdity of their wish; they
do not show any psychotic symptoms and usually there are
no signs of delusion, obesity or personality disorders [3, 9].
Furthermore, these persons do not want to be seen as
handicapped after the surgery, they strive for a rather
self-determined life. Likewise BIID should be distinguished
from Body Dysmorphic Disorder, because in BIID the
subject don’t see the concerned limb as ugly, they just have
the feeling it is not truly belonging to their body. While in
BDD all parts of the body come into question, the goal of the
BIID wish are mostly legs and arms. There are some parallels
to the Gender Identity Disorder, in which people have strong
feelings that their outer sexual organs don’t fit to their mental
identity. From this point of view, Prof. Dr. Michael First [3]
concludes that this phenomenon has to be called “Body
Integrity Identity Disorder” and should not subsumed under
the older term “apotemnophilia” as a paraphilia, which had
turned the focus on a sexual component [11]. Without any
question, several of these persons have erotic feelings in
respect to amputations, but this sexual component is not
found in all individuals with BIID [12, 13, 14]. Currently
McGeoch and co-authors [15] named this syndrome
“Xenomelia”. Body Integrity Identity Disorder (BIID) is a

Psychology and Behavioral Sciences 2014; 3(6): 222-232 223
rare mental disorder, under 680 randomly chosen people we
found only 1 with this syndrome, but we saw several kinds of
pre-stages: 7.9% of the general population know the wish to
get rid of a part of the body, because it does not seem to
belong to the self and 2.1% have had these feelings more
than once [16].
Even competent professionals are often unable to identify
BIID clearly [17]. The disorder manifests itself in the desire
to obtain a physical impairment, and then to feel better with a
new gained identity as an amputee. In addition to
amputations, the desired impairments are often palsy of arms
or legs. Currently discussed is, whether the desire for
incontinence, chronic illness as e.g. diabetes mellitus, or the
loss of one sense as e.g. deafness or blindness should be
summarized under BIID [4, 9, 18].
To get closer to the feelings of a handicapped person,
people suffering from BIID simulate their desired impairment
using crutches or a wheel-chair [e.g.: 3, 9, 10]; this behavior
is called “pretending”. Usually physicians refuse the
operation; then the urge can be so strong that the patients try
to achieve their desired physical state on their own, e.g. with
a self-made guillotine, chainsaws, freezing the limb in dry ice
or something comparable [see e.g.: 3]; occasionally a patient
does not survive such a self-made trial. But most amputations
are made by physicians in hospitals in developing countries,
paid by cash and claimed to be the result of an accident or
infection.
Previously, the effects of therapies (e.g. antidepressants,
behavioral therapy, psychoanalysis) were examined in some
single case studies [19, 20, 21]. Most of the authors came to
the conclusion that these treatments helped the patients to
cope with their strange urge, but in nearly all cases the desire
doesn’t vanish entirely. The BIID sufferers often like it to
compare their symptoms with Gender Identity Disorder
(GID), for which our society allows an operation to change
the secondary gender organs. In contrast to this opinion,
several scientists argue that GID surgery doesn’t produce a
handicap and it is unclear, whether BIID people are satisfied
with their amputation in the long run. In addition, critics
often express the assumption that there is a "looping effect"
after the operation, so that more surgeries are desired [22],
comparable to Body Dismorphic Disorder or mania
operativa.
Currently there is a livid discussion, whether amputations
in BIID should be done legally under strict conditions [23, 24,
25, 26, 27, 22, 28, 29]. The decision to solve this question
can only be made by examinations of “successful wannabes”,
i.e. persons who achieved the desired handicap. Therefore,
for the first time, in the here presented study we have
analyzed the consequences of an actual realization of the
desired impairment in a larger group. Main task of our work
was to solve the question how the symptoms short after an
operation changed, last these feelings for years or do the
subjects then want further operations? Another question was
to find out what kind of therapies these peoples tried before
the amputation.
A further important aspect asked for the social embeddings
of these persons, and to which extent they talk about their
problem with family members, relatives, friends or
colleagues.
A current explanation for the cause of BIID is a
dysfunction of the parietal lobe, in which the body is
represented [30, 31, 32]. Ramachandran [33] demanded that
BIID-sufferers are the opposite of people with amputations
due to real accidents. The latter often have phantom limb
feelings in the amputated arm or leg, while in BIID the limb
exists, but seems not to be animated in higher brain structures,
where the borders of the body are represented [2]. In
MRI-studies McGeoch and co-authors [15] found a missing
representation of the concerned limb in the upper part of the
parietal lobe. If this theory is right, amputated BIID patients
should not have any phantom limb feelings.
In addition, if the limb is not represented in the brain, it
could be that the affected limb does not longer occur in the
dreams after the surgery [34]. Therefore, we collected data of
the perception of the own body while dreaming.
2. Methods
The study design was approved by the ethics committee of
the University of Luebeck (Ref.: 10/051) and was in
accordance with the regulations stated in the Declaration of
Helsinki. For our investigation we used a questionnaire either
as paper-pencil- or online version. At first the participants
were informed about the pseudonymity. Subjects were persons
with BIID who already had achieved the desired operation. To
be really sure that only persons with amputations answered
our questionnaire, the participants had to answer specific
questions about their situation. Several of the participants
were known face-to-face with one of the authors. The
participants were exclusively contacted in BIID internet
forums via e-mail and received either the English or German
versions of the questionnaire. Thus, there was little chance a
not amputated BIID-subject was filling out the questionnaire.
2.1. Sample
Twenty-one participants send back the survey. This sample
included 18 men (85.7%) and three women (14.3%). The
average age was 53.5 years (27 – 73 y., SD: ±12.8 y.). 76.2%
were heterosexual, 9.5% homosexual and 14.3% bisexual. All,
except one, had an education degree higher or equal to the
specialist college. The majority is working in occupations
which are attended by high responsibility. More than a half of
them (52.4%) were married, 14.3% lived with their partner or
they were single, 9.5% lived in a relationship, but not in the
same household with their partner and 9.5% were divorced.
Fifteen persons (71.4%) had children, the number varied from
one to four. The achieved impairments are shown in Table 1.
2.2. Instruments
In the questionnaire some items had the level of nominal
scale (e.g. experiences of phantom limb feelings), most of the
questions used scales either 0  100 or -50  +50. Additional

224 Sarah Noll and Erich Kasten: Body Integrity Identity Disorder (BIID): How Satisfied are Successful Wannabes
answers in free text were related to the reasons of their desire,
the feelings the subjects have had about the surgery, the
advantages and disadvantages of daily living after the surgery
and an example of a dream they had. Analysis was made with
SPSS. Because the sample was small, in most groups
homogeneity of variances was missed and there was no
normal distribution of the data, we reckoned non-parametrical
tests.
Test-objectivity was given because we used a standardized
printed form of a test. We investigated the reliability of our test
with the correlation of some similar question, which appeared
on different pages of the questionnaire: “Do you had mental
disturbances due to BIID before the amputation” (scale 0 –
100) and “How would you judge yourself personally before
amputation?” (scale -50 to +50). For depressive disturbance
vs. depression/happiness before the operation the correlation
was r=-0.51 (p<0.05) and for anxiety disorder vs.
anxiety/courage before the operation was r=-0.45 (p<0.05).
Inner contingency for the parts of questions about (1) feelings
before the operation were Cronbach’s Alpha = 0.94; (2)
private, occupational, health and sexual situation before
surgery 0.76; (3) for feelings after the operation 0.82; (4) for
private, occupational, health and sexual situation after the
operation 0.47; (5) for satisfaction with the new body 0.80;
and (6) for phantom limb pain/feelings was Cronbach’s Alpha
= 0.68. Therefore in our mind the questionnaire had a
sufficient reliability.
Table 1 Description of the sample.
No Age Gender Handicap Year of operation Operation
from…
1 57 male (incomplete) palsy T5/6, leg orthotics (long lasting wearing leg splints
without possibility to move) 2010 --
2 48 male High incomplete paraplegia 2009 --
3 59 male Left above the knee amputation (LAK) 2001 self-induced
4 68 male Left above the knee amputation (LAK) 2008 physician
5 37 male Acampsia of the right knee by operation 2009 physician
6 65 male Right above the knee amputation (RAK) 1998 physician
7 47 male Left above the knee amputation (LAK) 2010 physician
8 67 male Left below the knee amputation (LBK) 2009 physician
9 73 male Right above the knee amputation (RAK) 2009 physician
10 63 male Left above the knee (LAK) + amputation of the left half forefinger 2000, 2004 physician
11 46 female Right above the knee amputation (RAK) 2003 self-induced
12 52 male Left above the knee (LAK), Right above the knee amputation (RAK) 1997 self-induced
13 59 male Left above the knee amputation (LAK) 1999 self-induced
14 38 male Right above the knee amputation (RAK) 2001 self-induced
15 68 male Left above the knee amputation (LAK) 2009 physician
16 m.d. male Left above the knee amputation (LAK) 2005 --
17 41 male Double above the knee (DAK) + right below the elbow amputation (RBE) m.d. friend
18 27 male Double above the knee amputation (DAK) 2008 friend
19 67 male Loss of teeth & amputation of both feet 2007 physician
20 43 female Left below the elbow amputation (LBE) 2012 physician
21 46 female Double above the knee (DAK) 2010 self-induced
3. Results
3.1. Motivations
As in other studies our subjects were unable really to
explain their motives for their desire for amputation. Typical,
but often cloudy answers were (not all answers are portrayed):
“To raise my inner body feelings, to step out of the bondages
of a schematic life with always the same cycles. I perceived my
legs as of no relevance.”; “The otherness always fascinated
me.”; “It supports my identity, I recognized myself even before
the operation as a handicapped man. It’s the picture I’ve of
myself.”; “Sometimes I felt envious, when I saw amputees;
found it fascinating to be this way. There are no concrete
reasons, I searched for them, but with time going on I found
out that I’m liking myself only as an amputee. Leg/arm were
disturbing.”; “I have some ideas, but I do not know if they`re
correct. Perhaps I believed that I was not OK, and came to
believe that if I were different I would be OK. Perhaps I
observed that people with disabilities received sympathy and I
did not. Perhaps it was because my mother was overprotective,
and did not want me to run and play.”; “I have no idea how,
why or where my wish/need to be an amputee came from and I
don’t know the cause either. I believe the desire/wish/need
comes from some genetic mix up in my brain. It’s not
something I wanted to have to deal with for most of my life.”;
“Since very young age I knew that my right leg is not
belonging to me and I want to get rid of it at all costs.”;
“Since my early childhood I have had an appetence and
yearning to live as an leg- and arm-amputee. Lifelong this
desire was very strong. Always I imagined to have an
amputation beginning from my left thigh and I’ve had this
body scheme before my inner view. The yearning for this ideal
body image grew with increased age; at last so much, that—in
regard to my age—I decided to look for a solution, because I
think help from medicine will not be possible for a long time,
i.e. for the time I have in front of me, having an age in the third
decade of my life. I only wanted to shake off the pressure and
the suffering from BIID and to have a liberate, released and
sufficient life in the future. Out of my view, instead of other

Psychology and Behavioral Sciences 2014; 3(6): 222-232 225
causes for an amputation (e.g. diabetes, tumor and so on), I
was suffering from BIID, which I haven’t had in my grip and
which hampered me to live a good life. To get healthy, the
amputation was necessary. Already as a child I had seen
several amputees, especially in the open air bath, and
instantly admired, how they handle their handicap. I was
absolutely fascinated and wished to be like these people. I felt
drawn to them and felt always well, when I watched them.”;
“…When I was a young child, I pretended that my stuffed
animals had missing legs, or I immobilized their legs. Anyway,
it got to a certain point where I had to proverbially get off the
pot, and it basically came down to a question of being happy. I
figured one way or another, how I could be happy, but on a
long term I could only be happier without legs.” (…)
3.2. Erotic Component
Several, but not all subjects wrote they feel an erotic
component as e.g.: “In puberty there came an additional
sexual component of about 50% weight.”; “In addition the
stump is erotic.”; “When my first wife suffered from an
osteo-sarcoma and lost her left leg, my life was perfect. The
stump became part of our sexual satisfaction.”; “There is an
aesthetic sexual complex, in addition I find the kind of walking
very erotic.”; “The otherness, the stump stimulated me.
Pretending always resulted in masturbation”
3.3. Estimation of the Affected Part of the Body
It was discussed, whether BIID has similarities with Body
Dysmorphic Disorder (BDD); in the latter people find a part of
their body ugly and try to get plastic-surgery. We therefore
asked: “How much differed the body part you had amputated
from the rest of your body?” The mean of all answers on a -50
to +50 scale showed a tendency to the negative half in all
dimensions:
Very unaesthetic / very aesthetic: -06.7 ± 25.0
Very soulless / very soulful: -13.5 ± 28.9
Not belonging / very belonging to me: -24.8 ± 35.2
Very disgusting / very beautiful: -08.6 ± 28.5
3.4. Ways to Get Rid of the Affected Limb
One of the most interesting questions was, how the subjects
achieved their handicap and what have they told their social
environment?
Nineteen subjects told us about their goal achievement. Ten
of them had a surgery, in most cases in a foreign country. They
told their environment about a medical problem with the
concerning limb. Eight subjects have achieved their
amputation caused by a deliberate accident. They used dry ice,
a pellet-gun, self-induced infections, medicines or a
railway-coach to roll about the leg. The excuse they invented
was mostly an accident-story. One person had a real accident
and therefore no need to invent an excuse.
3.5. Changes of Quality of Live after the Achieved
Handicap
Another important task of this study concerns the question,
if there is any change of the general quality of life after the
surgery? For this purpose, we asked questions about the
situation before and after the operation using scales from -50
to +50. All participants judged their situation as better after the
surgery and we found significant improvements in every field
(see Tab. 2).
Before the amputation, most of the participants (66.7%)
suffered very much from not having the desired operation
(mean on a 0 to 100 scale: 93.5 ± 11.8). After the operation
none of the persons with BIID regretted the amputation or
surgery: For this question, without any variability, everybody
had chosen zero (i.e. absolutely not). Furthermore, the
affected persons were very happy with their bodies after the
change (mean 88.1 ± 19.7), reached their ideal body image
(mean 87.6 ± 18.95) and felt complete with their body (mean
94.0 ± 13.1).
In addition, we had asked how they assessed themselves
personally before and after the amputation. We found
significant improvements after surgery for the dimensions
depression / happiness, introversion / extraversion, anxiety /
courage, nervous / calm, aggressive / peaceful, lethargic /
enthusiastic and wretched / self-confident (see Tab.3).
Furthermore persons with BIID do not feel handicapped
after the surgery: On a 0 to 100-scale the mean was 9.1 ± 11.4.
In addition they feel less pain. The mean of the answers on the
question, to what extent they are restricted in the quality of life
due to an amputation-pain was 12.1 ± 21.5 on a 0 – 100 scale.
Table 2 Changes of satisfaction in activities of daily living before and after
the achieved handicap on a -50 to +50 scale.
Before (mean
± SD) After (mean
± SD) Wilcoxon Test
general life situation
-20.5 ± 24.4 45.2 ± 7.5 p<.01
job satisfaction 20.5 ± 32.0 39.5 ± 21.8 p<.01
private life 3.8 ± 27.8 43.8 ± 8.7 p<.01
health status 20.0 ± 32.7 42.4 ± 12.2 p<.05
sexual satisfaction 15.2 ± 25.2 35.2 ± 22.5 p<.01
body identification -21.4 ± 29.0 47.6 ± 5.4 p<.01
Table 3 Changes of emotions before and after the achieved handicap on a
-50 to +50 scale.
Before (mean
± SD) After (mean
± SD) Wilcoxon
Test
depression/happiness -16.5 ± 23.2 41.0 ± 15.8 p<.01
introversion/extraversion -7.0 ± 22.3 24.3 ± 14.7 p<.01
anxiety/courage -6.8 ± 16.4 27.0 ± 17.5 p<.01
nervous/calm -16.0 ± 20.4 36.2 ± 16.3 p<.01
aggressive/peaceful -1.0 ± 26.5 37.6 ± 17.5 p<.01
lethargic/enthusiastic -6.5 ± 26.6 36.0 ± 18.5 p<.01
wretched/self-confident -5.0 ± 24.1 40.5 ± 15.3 p<.01
3.6. Disadvantages Due to the Achieved Handicap
Asked about the disadvantages of a live with a handicap,
they answered in free text (not all answers are reproduced
here): “Now I need more power and more time. My body
changes (I put on weight!), living is more expensive
(orthotic-device, wheel-chair, fitting my house and my car to
the handicap etc.).”; “I need the double of time for my
personal toilet. I’m sweating more on hot days, especially in

226 Sarah Noll and Erich Kasten: Body Integrity Identity Disorder (BIID): How Satisfied are Successful Wannabes
the prostheses. Sometimes people found me ugly when I’m
without prostheses.”; “Rather few. I can`t walk as far (yet)
without getting tired and have to use a ‘scooter’ for longer
walks. I have had some problems on and off with my prosthesis.
I find it harder to walk on a floor that is cluttered (as floors are
often by my young grandchildren) or on uneven terrain. But
actually my amputation has resulted in only rather minor
difficulties and adjustments. And I have enjoyed working to
find ways to overcome these minor difficulties.”; “Absolutely
nothing. Things I can’t do now without problems are
secondary and I’m missing nothing.”; “Absolutely no
disadvantages. With my ‘wheeli’ I can reach every point and
can do what I want.”; “Need more surgery because the
doctors botched the first one. Was treated very badly in the
hospital in general, and still dealing with some stress stuff
from that too.“ (…)
3.7. Advantages Due to the Achieved Handicap
Asked about the advantages of a live with a handicap, our
subjects answered: “Since living permanently in a
wheel-chair (July2010) I’m free of depressions und can enjoy
my life. Even in the wheel-chair I’m able to work in my
occupation. Before this, BIID pressed me into a double-life.
Now this compulsion is gone. The more atrophy I’m getting in
my legs, the easier it becomes for me.”; ”Feeling of
identity—now I’m much more myself, more openness und
feelings of lightness in my life; I can meet people more openly
now. I see my job in a new way and find more power and
creativity in daily living.”; “At last I found myself relaxed,
happy, satisfied. The knowledge I have done the right thing.”;
“My preoccupation with BIID has been markedly resolved.
While I am still interested in amputation related issues, they
don`t dominate my thoughts or distract me from other interests,
obligation and the like. As a consequence I am much more
content, much less irritable, much more productive
professionally, and a much better member of my family. In
addition, I really enjoy being an amputee. I enjoy the
challenges of finding new ways to do things, to become
stronger and more fit. I like crutch walking and using my
prosthesis, I like my stump. Basically I am just much happier
with myself.”; “When I’m looking in the mirror today, I can
see me in the way I always wanted to be. I like the stump in my
thigh. I don’t need to think about amputations any further. I
can stop to hide my feelings before my family. I’m calmer and
more relaxed. I got more life-energy.”; “Finally without the
need to think the whole day about how I will become one day
an amputee.” (…)
3.8. Emotions and Thoughts Short before the Operation
The next questions we asked were whether there was a
change of feelings before, directly after, one year after
amputation and now. Nearly all participants wrote they were
afraid before the surgery. This fear disappeared fast after the
surgery and was generally replaced by euphoria. After weeks
for most of the participants this euphoria changed to normal
feelings, while others demanded it goes on until now. The
answers for this question were homogenous insofar as all
participants said, they are happier today, feel calmer and more
content.
Short time before the operation the subjects uttered
following thoughts and feelings: “In the years before the
operation I’ve had a double life. I always felt anxious that
somebody trapped me, when I was pretending. Because I have
a job in the public, I was anxious then to be punished for my
life. Short time before the operation I’ve had a very positive
talk with my boss, this helped a lot. The days before the
operation were full of joy and hope. I’ve had no fears, slept
well and was able to think in a constructive manner.”;
“Neutral at first, because I knew that there would be no palsy
due to the operation of the spinal disc. I always was realistic. I
felt disappointed because the operation went fine without any
complications and nothing had happened in the direction of
my desire. Then, two weeks later I had an accident with the
result of a paraplegia. Directly thereafter I had feelings of
happiness.”; “Many question marks, how life will go on after
the amputation, and how my people will get along with it.
Insecurity for details, but no anxiety.”; “Unable to understand
my fortune. For years I’ve worked for this day and suddenly,
now it was here! Everything felt normal and sure. The stuff in
the hospital treated me totally normal; I was enjoyed how fast
and normal everything ran. I’ve had fears to be seen as a
lunatic, but this was absolutely not the case.”; “Excitement.
Will I be relieved? Will I just want more amputations? Will I
have complications or just even die? Could I or the surgeon be
found out and get in trouble? Am I making a mistake? Is it
crazy to do this? I have wanted this for so long, I would hate
myself for the rest of my life if I back out now.”; “When the
physician explained me that they must amputate the right leg, I
was nearly unable to hide my joy. I’ve reached my goal.
Because the amputation was done as an emergency, they made
the paperwork short after the talk, and the anesthetist
discussed the narcosis with me. That day I’ve not eaten so
much and therefore they could prepare me for the operation
immediately. Within 2 hours I had lost my leg. I’ve had a lot of
respect before the organization, but my happiness was very
huge.”; “Joyful equanimity, during the spinal anesthesia I
was awake and watched.”; “In one word: EXITED.” (…)
3.9. Emotions and Thoughts Short after the Operation
Feelings and thoughts directly after the operation were: “I
wasn’t able to understand my luck, like the motto: ‘How have I
deserved this’—or is there still any higher power that filled my
life with luck and life? I was not able to understand why the
‘fate’ chose me under so many people suffering from BIID.
Because of this I recognized happiness and thankfulness.“;
“When I awoke in the room, I felt relaxation and relief,
lightness as never before. I had the feeling: ‘At last this is
forever!’ I can’t stop to look at the leg. I felt light as a feather. I
felt totally normal, as if it ever should have been this way.”;
“When I woke up, the first I recognized was that BIID was
gone. For sure this was the most overwhelming feeling in my
life. I suffered for more than 40 years from BIID—and now it’s
vanished.”; “I was elated. I woke up just after the amputation

Psychology and Behavioral Sciences 2014; 3(6): 222-232 227
when I was returned to my room in the hospital. My wife and
the surgical team were all together eating and talking when
they brought me into the room. I awakened briefly and they
said the surgery was done and I said thank you and fell back to
sleep. The next morning they woke me up and I looked down
where my leg should have been and saw that it was gone. I was
extremely happy. I could still feel my leg, so I had to actually
look to make sure it was gone. I was ecstatic! I felt like a
teenager again, even though I was 56 years old! I was as
happy as I’d ever been and I was really horny, too! I felt
extremely great for the next 6-8 weeks, then things started to
return to the new “normal”. I am still happy after over 7 years
as an LAK amputee. The only regret I have is that I only wish I
could have had my amputation done when I was in my early
teenage years or my early twenties. I lost so much of my life
because I had to endure all those long years without my
needed amputation and stump!”; “After a well-slept night I
was en route with my crutches, in a rent bungalow at the sea.”;
“Have I really achieved it? Am I an amputee? This was my
first thought. Immediately I looked and saw with great relief
and happiness that I had reached my goal. Simply fantastic,
now I have the body I always wanted to own. I was happy, full
of joy, felt good and sufficient, that everything was as it was. In
addition I suffered no pain.”; “In one word: FINALLY.” (…)
3.10. Emotions and Thoughts One Year after the Operation
Feelings and opinions about the operation one year later
were: “Since about 11 months I’m living permanently with
orthotics or wheel-chair. I live my everyday life freed from
burnout and depression, meet friends without anxiety, can
enjoy trivial things. I’ve got a new view of life, enriching me.
In some way the feeling: I arrived.”; “This is the only single
truth, you feel well, try to savor as long as possible, perhaps it
will work with the second leg as well.”; “I’m still feeling this
lightness. I recognize a total normality. Sometimes I’m looking
at myself in the mirror und feel to be attractive. I can go to
people better and with more confidence. At any time I would
repeat this operation, only sometimes I regret I’ve not had it
10 years earlier.”; “I am happier than I was ever before. I am
surprised how easy it is to be an amputee. I am surprised how
little other people care that I am an amputee, or that I had
chosen to be one. I no longer need to do something all the time
to escape from my bad feelings about myself. I am confident
that if anyone tries to abuse me again, I will have the strength
and courage to prevail. I no longer feel guilty or ashamed to
be what I am. People treat me much better because I do not
appear guilty or unhappy.”; “More than happy. Since the first
day I felt ‘complete’. The adaption of the prosthesis was
without any problems and today I can walk without crutches.”;
“I wish they’d done a good job with the operation. They
focused too much effort on preserving bone length, and left me
with very little soft tissue at the ends of my stumps, they left the
bone ends messy, and they just chopped the nerves and let that
be that, so I was in a lot of pain and having to deal with keep
money coming in, so I wouldn’t be completely uninsured and
destitute. Oh, and they sutured things up so that my right
femur’s at the wrong angle and my muscles go clicking
painfully over the bone ends every time I move. It’s especially
frustrating because I was doing really well on prostheses
before the pain problems kicked in, and I have a nice pair of
C-Legs just sitting in the closet that I can’t use at all, other
than to just stand in.” (…)
3.11. Emotions and Thoughts Now
Asked for the feelings today, our subjects wrote: “All as said
above. Only to say in the meantime I learned that my luck will
stay und this makes me more than happy. ‘Hurray‘, now I’m the
human I always wanted to be and can continue and nobody can
take away my wheel-chair! The advantages outweigh the
disadvantages by far.“; “Would always do the same. Never
regretted and I am proud with my stump. Get very excited, when
somebody speaks about it. Touches of the stump are like positive
electric impulses.”; “Rarely questions/concerns mix between
my positive experiences. But the latter prevail I never wanted
not to be amputated. I rather should have had the amputation
with 25 or 30 or even earlier; through this much quality of life
was lost. To see my reversed image in the mirror was never a
topic, today it is. It’s a shame that after a careful examination, a
legal amputation for people like me is hampered and people
with psychological strain have to lay on railways and risk their
life. The real operation was more a recovery, only one day some
pain.”; “Life keeps getting better. I feel a bit envious when I see
someone with an AK amputation but I am perfectly fine as I am
and I do not need anything else. My wife and I love each other
more than ever before.”; “After more than 7 years as an LAK
amputee, I’m still extremely happy and content with my
amputation and my stump! I can’t imagine NOT being an
amputee. I feel as though my body is now in tune with my mind!
I do not regret my choice to get an amputation at all. Yes, there
are times where it is and can be a challenge, it’s still better than
all the suffering I lived through until I got my amputation. I love
waking up and seeing my stump there. My stump is still very
erotic and I do not suffer from any pain at all, including no
phantom pains. I have phantom sensations, but not as many as I
once had. I miss them a lot as they really reminded me that I was
an amputee and they felt really good. The sensations I have now,
help me to bring my Phantom-Leg back to me. So, I can still
‘feel’ my missing leg whenever I choose!”; “I still need to get
surgery to fix things, but I’m actually in a place where I can do
that. I switched jobs and moved relatively recently, and aside
from the pain problems, life’s going really well. The amputation
stuff definitely affects people’s perceptions of me, which is
frustrating, and I still have to deal with every stupid aspect of
our fucked-up health-care system and the way the medical
suppliers bleed everybody else dry so they can maintain their
markups, but I can deal with that at least. Now I just need to get
past the surgery, lose some weight, and get back up on the
prostheses so I can get back into things all the way.” (…)
3.12. Effects of Psychotherapy, Psychopharmacological
Medication and Relaxation Techniques
All participants had resisted their desire for years and many
tried to avoid the operation with different kinds of therapies.

228 Sarah Noll and Erich Kasten: Body Integrity Identity Disorder (BIID): How Satisfied are Successful Wannabes
The participants were asked to give us information about these
therapies (i.e. psychotherapy, pharmacological treatment and
relaxation techniques).
Seven persons (33.3%) never had any treatment, while
others tried more than one kind of therapy. Six BIID-sufferers
(28.6%) participated in psychoanalysis and another seven
(33.3%) in behavioral therapy; three (14.3%) had
depth-psychology, twelve (57.1%) had counseling before
surgery, one (4.8%) psychodrama and another chose the
category “other psychotherapy”. Only two persons said, they
felt a profit from the therapy, all of them had counseling
therapy. In contrast the desire for amputation increased in five
other cases during a therapy (see Tab. 4).
Table 4 Change of the wish for amputation in the group of patients who had
psychotherapy before the operation.
Effect of psychotherapy Number (percent) of
participants with psychotherapy
Considerable decrease of BIID desire
1 (6.3%)
Little decrease of BIID desire 1 (6.3%)
No influence on BIID desire 9 (56.3%)
Little increase of BIID desire 2 (12.5%)
Considerable increase of BIID desire
3 (18.8%)
Twelve persons had taken psychopharmacological
medications, some of them up to 3 different kinds of medicine.
Ten (83.3%), i.e. most of them, got antidepressant, two (16.7%)
neuroleptica, another two (16.7%) tranquilizer and four
(33.3%) tried other medications to reduce the desire for
amputation. These medications had no positive effects, about
two thirds of these twelve patients stated that the desire for
surgery was constant and in about one third the BIID-desire
increased (see Tab. 5).
Thirteen persons used relaxation techniques, several tried
different methods, one of them up to five different kinds. Eight
(61.5%) autogenic training, seven (53.8%) mediation and five
(38.5%) the progressive muscle relaxation, Yoga and QiGong
were used by one person each (7.7%), two participants chose
the category “others” (15.4%). The majority of these persons
did not profit from relaxation techniques. Due to the
concentration on the body, the BIID desire increased in 53.9%
(seven persons), only two persons (15.4%) stated decreased
wishes for amputation (one used autogenic training, the other
progressive muscle relaxation), there was no clear change in
the remnant 30.8% (four persons), see Table 6.
Table 5 Change of the wish for amputation in the group of patients who had
psychopharmacological medication in the years before the operation.
Effects of psychopharmacological
medication
Number (percent) of
participants with
pharmacotherapy
Considerable decrease of BIID desire
0 (0.0%)
Little decrease of BIID desire 0 (0.0%)
No influence on BIID desire 8 (72.7%)
Little increase of BIID desire 1 (9.1%)
Considerable increase of BIID desire
2 (18.2%)
Table 6 Change of the wish for amputation in the group of patients who had
learned a relaxation technique before the operation.
Effect of relaxation techniques Number (percent) of
participants with relaxation
techniques
Considerable decrease of BIID desire
0 (0.0%)
Little decrease of BIID desire 2 (15.4%)
No influence on BIID desire 4 (30.8%)
Little increase of BIID desire 5 (38.5%)
Considerable increase of BIID desire
2 (15.4%)
3.13. Effects on Mental Disorders
In cases of involuntarily amputation, e.g. due to accidents or
diabetes-necrosis, mental disorders as depression or anxiety
are reported quite often. In the next part, our questionnaire
investigated, whether this is the case in a desired amputation,
too. We surveyed the appearance of anxiety, depression,
concentration deficits, sleeping disorders and psychosomatic
disorders before and after having surgery. Those disorders, if
existing, significantly decreased (see Tab. 7).
Table 7 Extent of emotional and psychosomatic disorders before and after
the operation on a 0 to 100 scale.
Disturbance before OP
(mean ± SD) after OP
(mean ± SD)
Wilcoxon
Test
anxiety 23.5 ± 26.0 3.8 ± 9.2 p<.01
depression 41.0 ± 33.2 2.4 ± 7.0 p<.001
concentration deficits 43.0 ± 31.1 3.8 ± 8.1 p<.001
sleep disorders 29.0 ± 33.7 2.4 ± 5.4 p<.001
psychosomatic disorders
17.5 ± 28.1 1.0 ± 3.0 p<.05
One argument against a legalization of amputation for
persons with BIID is that these people may utter a desire for
more surgeries, when the first one is done. Therefore in our
questionnaire we asked whether they desire further surgeries.
Seventeen out of 20 persons (1 m.d.) stated that they do not
feel a desire for any other surgery. Two felt a wish for an
additional right above the elbow amputation, one stated the
wish for a double above the knee amputation and another one
wish a left above the elbow amputation.
3.14. To Whom do They Tell the Truth?
An amputation leads to a handicap, in addition to the
psychosocial reactions of the surrounding people, this has
several financial consequences, e.g. the after-care must be
paid by the insurance, in several patients the abilities to do
their work can be restricted and partially the patient need an
education for another job. While there is no problem with
payments of the health care system, when the amputation is
due to an accident or an illness, a self-afflicted handicap can
lead to juristically embarrassments. Therefore, at first nearly
all operated BIID sufferers claimed to have had an accident or
a severe infection. On the other hand, an appreciative social
environment is very important for long-term satisfaction and it
may be important to these people to have somebody to talk
about their situation. Here the question emerges, do they tell
the truth to good friends and close relatives?
Sixteen (out of 20) of the participants (76.2%) stated that
they have told their families the true reasons for amputation;

Psychology and Behavioral Sciences 2014; 3(6): 222-232 229
twelve out of 20 (57.1%) told their friends as well. In contrast,
colleagues were rarely informed in most cases (6 out of 19,
28.6%).
3.15. Phantom Limb Feelings
Another part of the questionnaire investigated the presence
of phantom limb pain which could cause strong restrictions for
persons concerned. Missing phantom limb feelings would
support the theory of a failure of embedment of the amputated
leg or arm into the body scheme of BIID-persons.
Fifteen out of 18 participants (83.3%) had normal feelings
of pain at the stump after the operation. The mean of this pain
on a 0 – 100 scale was 22.8 ±26.1. Seventeen out of 18 of the
participants (94.4%), who answered this question, stated that
have phantom limb pain. The mean of phantom limb pain on a
0 to 100 scale was 28.9 ± 30.7. Seventeen out of 18
participants (94.4%) felt sensations in their phantom limbs.
The mean of the frequency of these phantom feelings on a “not
at all 0 – 100 very often” scale was 55.3 ±36.8. In ten
participants (55.5%) these feelings began directly after the
operation, in three (16.6%) some days later, in one (5.5%)
after some weeks, in three (16.6%) after some months and in
one (5.5%) these feelings emerged after several years. The
participants described these feelings as: itching (n=11),
needles & pins (n=9), pressure (n=7), limb feels smaller than
natural (n=3), longer (n=1), shorter (n=1), warmer (n=2),
colder (n=1), and “others” (n=4).
The question: “Do you sometimes forget that your body
limb has been amputated?” was asked on a scale “not at all 0
to 100 very often”. Only three out of 19 patients never forgot
to be handicapped. The mean of the other 16 was 65.0 ± 35.6,
i.e. they tended often to forget, that they are disabled. For the
16 who answered “yes”, our next question asked: “Do you
intuitively use it?” six out of these 16 persons (37.5%) never
tried to use the non-existing limb. The mean of the other nine
(62.5%) was 34.4 ± 29.2, i.e. they tended rarely to use the
amputated limb intuitively.
Whenever phantom limb pain was observed most persons
(12 out of 19 persons, 63.2%) feel absolutely not impaired in
their quality of life (on a scale from 0 to 100). For the other
seven the mean was 32.9 ± 24.3.
3.16. Dreams
Phantom limb pain seems to influence the way of dreaming
of the own body [34]. The question: “Have you ever dreamed
of yourself as an amputee before the operation?” was
answered from 19 persons. Only two (10.5%) crossed the
alternative “never”. Three (15.8%) participants remembered
one or two dreams like this, four (21.1%) said they remember
about 3-10 amputee-dreams and ten (52.6%) had more than 10
dreams.
In addition, we asked, whether the participants after the
operation dreamed of themselves with their old (intact) body
or with their new (amputated) body. Nineteen subjects were
able to remember dreams and to answer this question. Only
three (15.8%) had mostly an intact body in their dreams (n=1
always), twelve subjects (63.2%) felt in most dreams as an
amputee (n=3 always), and in three (15.8%) both was about
equally frequent. One subject (5.2%) wrote that the body in
dreams is different to the actual body but the person didn’t
describe it in detail.
The time in which the switch from an unimpaired body to a
disabled body took place in the dreams was very different.
Only fourteen subjects were able to answer this question.
Sometimes it was within a few days (n=7, 50%) or weeks (n=3,
21.4%) or months (n=3, 21.4%), only one person said, this
was the case after years (n=1, 7.2%).
Some typical dreams were: “Before the operation I nearly
always dreamed about amputation or poliomyelitis (my real
BIID-goal). After I lost my leg, my dreams changed. The
dreams never affect the concrete number of my legs. I’m
interpreting this in the way that amputation doesn’t any longer
bother me, because I don’t have BIID any longer.”; “Mostly I
dream of being in my body as it is now. Immediately after
amputation, I often dreamed of still having two legs. Not as an
important part of the dream, just as background.”; “I saw how
I ride my bicycle or motorcycle with one leg. Or I sit with my
stump on the hand-grip of the crutch and jump around on the
sandy beach.”; “It was nice to see myself in my dream, around
me all surgeons, doing a leg amputation. It was a
disappointment after waking up, out of this dream.”; “I drove
with my wheel-chair through a long floor of a manor house
into my garden, which looked like a park. Birds were chirping
and this makes me awake.” (…)
3.17. Pretending Behavior and Body Feelings
There were some additional questions we tried to answer
with our investigation. One question was, whether the
frequency of pretending behavior has any relation to how the
person judged the affected limb. We found a small, but
significant correlation of r = 0.44 (p<0.05) between the
question ”How much differed the body part you had
amputated from the rest of your body? Not belonging to very
belonging to me” (on a -50 to +50 scale) with the frequency of
pretending behavior (on a 0 to 100 scale).
3.18. Use of Prostheses and Body Feeling
One strange fact is that many BIID-amputees are using
prostheses after the amputation. At last with this device they
rebuild a status they have had before with their real limb. We
had the theory that the more belonging and soulful this limb
has been before the amputation, the higher the chance that the
subject will tend to replace it with a prosthesis. Therefore we
analyzed the correlation between the results of the question
“Are you using prostheses and devices in order not to appear
handicapped” (on a “never -50 to +50 very often” scale) and
“how much differed the body part you had amputated from the
remnant of your body” and found:
Very soulless – very soulful: r = 0.53 (p<0.05)
Not belonging – very belonging to me: r = 0.49 (p<0.05)
Very disgusting – very beautiful: r = 0.52 (p<0.05)
Though these significant correlations support our theory,

230 Sarah Noll and Erich Kasten: Body Integrity Identity Disorder (BIID): How Satisfied are Successful Wannabes
it’s hard to explain then why the limb still was amputated even
when the person has had feelings of belonging and
soulfulness.
4. Discussion
To be disabled would be a worse fate for most of us who are
owner of a healthy body. At first glance it is unbelievable that
someone claims to be happy only after changing his or her
intact body into a handicapped one. Until now it’s not clear
why and how this wish developed. Still all of us know desires,
which, once they emerged, are hardly to get rid of. But the
wish to have a new pair of shoes, to buy a motorcycle or to
find a new intimate partner is by far not the same desire
compared with the loss of a leg or an arm. Or, to overdraw this
point, some depressive people are feeling a strong urge to
commit suicide; it is their desire to be dead. The question
emerges, when and how can the health care system help these
people and when do we have to protect them from their own
wishes? Must the society prevent, when somebody wants an
amputation of an otherwise healthy limb? The here presented
results have no need to struggle with ethical and juristic
limitations of a desired amputation, because all people, who
were interrogated in our study, had already achieved their wish.
The major goal of our study was the question, whether an
amputation or another kind of surgery really helped people
suffering from BIID in the long run?
Our sample included 85.7% men and 14.3% women, this
relation is consistent with the results from other studies
showing that more men than women seem to be affected by
BIID. 76.2% were heterosexual, and 9.5% homosexual. Thus
the percentage of homosexuals is higher than in the total
population, but lower than the postulated number of Stirn [10].
The most frequent impairment in our study was an
amputation left above the knee. This preference for the left
side is confirmed by other studies [e.g. 10, 3] and was
explained by the cause that driving an automobile is possible
when you lost your left leg [7, 36]. Other disabilities, which
were more than once reported, were leg amputations and palsy.
Most discussions about BIID consider only amputations, but
in our study several other impairment were figured out. In five
of 21 cases (23.8%), the desired impairment was not or not
exclusively an amputation of a limb. Thus, the focus of a
quarter of the persons is not only to the loss of a limb.
Our first task was to investigate motives. As in other studies
the motivations were still unclear. Most subjects remembered
that the wish emerged in childhood and adolescence, often
after viewing a disabled person. In contrast to normal children,
who react with sadness, when they see such a “poor”
handicapped amputee, the BIID-subjects were fascinated and
developed the idea to be like these disabled people.
All of them tried to fight against their wish for decades of
years. Years of pondering about a question without to be able
to find a solution, costs a lot of energy. This is not typical for
BIID but also the case in several other situations of the life, e.g.
when a person is unable to decide whether he or she better
should divorce from a partner or change a job with good
earnings but a worse boss. The lasting musing about the pros
and cons draws considerable energy from activities of daily
living. This may explain, that all BIID subjects wrote they
have had feelings of depression before the operation and felt
free, when they had achieved the desired operation.
In contrast to patients with an amputation due to accidents
or infections, BIID-afflicted persons are feeling joyful after
the amputation. They listed several disadvantages, but in total
they said that the advantage to have reached their goal
outbalanced these disadvantages by far. A lot of areas of life
changed for these persons after the amputation, but these
changes are not felt as wearing but as exonerative. The
reported improvements are not only descriptively but also
statistically relevant. Our detailed questions about the
emotions and thoughts short after the operation, one year later
and now show that these modifications are not short
term-improvements but long term.
In contrast to body dysmorphic disorder (BDD) is in BIID
subjects only a very small tendency to judge the attractiveness
of the concerned limb as “unaesthetic” and “disgusting”,
much more they have the feeling it is “soulless” and “not
belonging” to the self. So we can confirm there is a difference
between BDD and BIID.
Since there is no known therapy that seems to promise a
healing from BIID, amputation has to be considered as a
possibility to help these persons. In the foreground stands the
quality of life, which is crucial for success or failure of therapy.
Our results lead to the conclusion that for this sample of
persons an improvement in quality of life is recognizable.
Mental disturbances decreased. Wishes for further surgeries
were seen in some participants, but all claimed to have had
these desires before their first operation.
Frequently participants stated that living with BIID and not
being helped by surgery is the worst case. But, next to an
operation, we must ask, whether it can give other ways to help
these people? In our study counseling therapy had a decent
effect on the desire for amputation. We found no clear effect of
other psychotherapeutic methods or relaxation techniques or
psychopharmacological treatment. There is a restriction of
these results, because we only asked for the kind of therapy,
but missed to ask how long the subjects have had it. On the
other hand it must be said, that in some participants the wish
for amputation increased due to one of these methods. In our
opinion there can be a risk that due to talking about BIID the
attention of the patients was focused more on this wish.
Especially relaxation technique draws the attention to the
body and increased the desire in some subjects. These
conclusions are restricted, because in our study we only
investigated people who decided pro operation. At last this
decision was based on the fact, that no other therapy has had
any sufficient effect, i.e. the results presented here do not
mean that therapy can not have any effects on all BIID
affected people. Those therapies were only ineffective for
most of the persons being asked in this sample, otherwise
participants would not have had surgery. Until now there
exists no standardized therapy study with a larger group of
BIID sufferers to determine, whether a therapy is helpful for

Psychology and Behavioral Sciences 2014; 3(6): 222-232 231
these persons or not.
Certainly there has to be further research on how to improve
psychotherapy for people with BIID and to make it more
effective. As Müller [22] stated, it would be reprehensible to
amputate healthy body parts when there is an efficient
alternative therapy. Oliver Sacks [35] reported a possible
method. He used music therapy to reach a state in which he
accepted his leg again.
In our study there was only one out of 21 subjects who
suffered from heavy side effects and even this person judged it
better to have fulfilled his wish than to suffer longer from
grieves due to BIID. Most of the persons report that they had
suffered more from BIID than from any disadvantage in a life
as a disabled person. There are no reports of regrets even when
complications occurred. It can be assumed that the positive
identification with the own body after surgery, neutralize
negative effects of BIID. Those effects are solid even for the
longer term.
As said in the introduction, a current explanation for the
cause of BIID is a dysfunction of the parietal lobe, in which
the body is represented [30, 31, 32, 33]. If this theory is right,
amputated BIID patients should not have any phantom limb
feelings. Our data shows that most subjects, we interrogated,
had phantom limb feelings. Possibly these results contradict
the theory. But we have to assume, that phantom limb feelings
depend on an intact somato-sensory area in the parietal lobe.
This area clearly is undamaged in BIID-sufferers, otherwise
they would have been be unable to have sporting activities
before the operation. The body-scheme may lay in another
parietal area, which is perhaps not responsible for
phantom-limb feelings.
The results about dreams we found, do not clearly support
any theory. Some of our subjects dreamed to be amputated
before the operation, some dreamed to have all limbs short
after the operation. We found no clear pattern, but all subjects
dreamed of themselves as handicapped very fast after the
operation. For an explanation of these results we should have
had a group of amputated people due to accident or infections,
but this was not the central goal of our study.
5. Conclusion
As long as there is no alternative therapy like this, people
with BIID still need to be helped. Most of them live with BIID
for decades of years and many of them decide they do not have
more time to wait for results of any scientific studies to come.
So it is important to think of any help that can be given to
people with BIID now. Most of concerned persons state a high
level of suffering especially in reported cases of
self-amputations. Levy [26] already claimed legal amputation
surgery for people with BIID as soon as it is obvious that the
disorder is hard to treat. Right now the only effective way to
help seems to be the surgery. For that reason and for reasons of
autonomy, amputation should be recognized as one possible
way of therapy and should be permitted once further studies
find similar results.
Enrolling of BIID in a Classification Systems as ICD or
DSM may be a good start. Further therapies must be
developed. In addition a legalization of such amputations has
to be discussed. Nowadays we have several surgical
operations such as e.g. breast-implants (which can cause back
issues) or nose correction for young clients (even though their
noses still grow), or surgery on infants who are born with a
“not identifiable genital”. These surgeries are legal. However,
amputation in BIID subjects created a body which does not
correspond with human’s ideal of beauty. It brings out a
disabled body and the human society is afraid to be
handicapped. Our results show that the amputation had helped
all BIID affected subjects and, as long as no other therapy
exists, it may be better to help these people with an operation
than to take the risk of deliberate accidents or operations
somewhere in developing countries.
Acknowledgements
We want to thank Prof. Peter Brugger for the support of this
study with a lot of important ideas and for the collaboration on
the questionnaire.
References
[1] R. Barnes, “The bizarre request for amputation”, The
International Journal of Lower Extremity Wounds, 10(4), 2011,
pp 186-189.
[2] P. Brugger, “The wish for amputation – bizarre quirk or
neurological disorder?“, Transl. J. Ars medici, 2, 2011, pp 1-5.
[Der Wunsch nach Amputation – Bizarre Macke oder
neurologische Störung?]
[3] M.B. First, “Desire for amputation of a limb: paraphilia,
psychosis or a new type of identity disorder”, Psychological
medicine, 34, 2005, pp 1-10.
[4] M.B. First, and C.E. Fisher, “Body Integrity Identity Disorder:
The persistent desire to acquire a physical disability”,
Psychopathology, 45, 2012, pp 3-14.
[5] G. Furth and R. Smith, “Apotemnophilia: Information,
Questions, Answers, and Recommendations about self-demand
Amputation”. Bloomington, IN: 1st Books Library, 2000.
[6] A.J. Johnson, S.-L- Liew and L. Aziz-Zadeh, “Demographics,
learning and imitation, and body schema in Body Integrity
Identity Disorder”, Indiana University Undergraduate Journal
of Cognitive Science, 6, 2011, pp 8-15.
[7] E. Kasten, “Body Integrity Identity Disorder (BIID):
Interrogation of people concerned and explanatory approaches”,
Transl. J. Fortschritte der Neurologie und Psychiatrie, 77, 2009,
pp 16-24 [Body Integrity Identity Disorder (BIID): Befragung
von Betroffenen und Erklärungsansätze.].
[8] E. Kasten and F. Spithaler, “Body Integrity Identity Disorder:
personality profiles and investigation of motives,” in Body
Integrity Identity Disorder, A. Stirn, A. Thiel and S. Oddo, Eds.
Lengerich: Pabst Science Publishers, 2009, pp 20-40.
[9] A. Stirn, A. Thiel and S. Oddo, “Body Integrity Identity
Disorder: psychological, neurobiological, ethical and legal
aspects”, Lengerich: Pabst, 2009.

232 Sarah Noll and Erich Kasten: Body Integrity Identity Disorder (BIID): How Satisfied are Successful Wannabes
[10] A. Stirn, A. Thiel and S. Oddo, “Body Integrity Identity
Disorder: clinical picture, diagnosis, therapeutic approaches”,
Transl. B. Weinheim: Beltz, 2010. [Body Integrity Identity
Disorder: Störungsbild, Diagnostik, Therapieansätze].
[11] I. Martin, „Mancophilia – appearance and interactions“, Transl.
B. Maintal: Homo-Mancus, 2010. [Mancophilie –
Erscheinungsformen und Interaktionen].
[12] W. Everaerd, “A case of apotemnophilia: a handicap as sexual
preference”, American Journal of Psychiatry, 37(2), 1983, pp
285-293.
[13] J. Money and K.W. Simcore, “Acrotomophilia, sex and
disability: new concepts and case report”, Sexuality and
Disability, 7(12), 1986, pp 43-50.
[14] V.S. Ramachandran, D. Brang, P.D. McGeoch and W. Rosar,
“Sexual and food preference in apotemnophilia and anorexia:
interactions between 'beliefs' and 'needs' regulated by two-way
connections between body image and limbic structures”,
Perception, 38(5), 2009, pp 775-777.
[15] P.D. McGeoch, D. Brang, T. Song, R.L. Lee, M. Huang and V.S.
Ramachandran, “Xenomelia: a new right parietal lobe
syndrome”, JNNP, DOI, 10.1136/jnnp-2011-300224, 2011.
[16] F. Spithaler and E. Kasten, “epidemiological examination of
the incidence of changes in body perception“, Transl. J.
Zeitschrift für Medizinische Psychologie, 2012.
[Epidemiologische Untersuchung der Inzidenz von
Veränderungen der Körperwahrnehmung].
[17] D. Neff and E. Kasten, “Body Integrity Identity Disorder
(BIID): What do health care professionals know?”, European
Journal of Counselling Psychology, 1(2), 2009, pp 16-30.
[18] D. A. Veale, “Compelling Desire for Deafness”, The Journal of
Deaf Studies and Deaf Education, 11(3), 2006, pp 369-372.
[19] A.W. Braam, S. Visser, D.C. Cath and W.J.G. Hoogendijk,
“Investigation of the syndrome of Apotemnophilia and course
of a cognitive-behavioral therapy”, Psychopathology, 39, 2006,
pp 32-37.
[20] A.W. Braam and N. de Boer-Kreeft, “Case-Report – The
ultimative relief: resolution of the apotemnophilia syndrome”
in Body Integrity Identity Disorder, A. Stirn, A. Thiel and S.
Oddo, Eds. Lengerich: Pabst Science Publishers, 2009, pp
70-78.
[21] A, Thiel, S. Oddo, S. Skoruppa, J. Thiel, F. Ehni, D. Bennett
and A. Stirn, “Psychotherapy- and psychometric research with
BIID-sufferers”, in Body Integrity Identity Disorder:
psychological, neurobiological, ethical and legal aspects, A.
Stirn, A. Thiel, S. Oddo, Eds. Lengerich: Pabst, 2009, pp 58-69.
[22] S. Müller, “BIID, is the wish for amputation an autonomic
decision or a manifestation of a neurological disorder?”, Transl.
B. in Normal-anders-krank? Akzeptanz, Stigmatisierung und
Pathologisierung im Kontext der Medizin, D. Groß, S. Müller
& J. Steinmetzer, Eds. Berlin: Medizinisch wissenschaftliche
Verlagsgesellschaft, 2008, pp 229-2669. [BIID, ist der
Amputationswunsch eine autonome Entscheidung oder
Ausdruck einer neurologischen Störung?].
[23] T. Bayne and N. Levy, “Amputees by choice: Body Integrity
Identity Disorder and the ethics of amputation”, Journal of
Applied Psychology, 22(1), 2005, pp 75-85.
[24] J. Beckford-Ball, “The amputation of healthy limbs is not an
option”, British Journal of Nursing, 9(4), 2000, pp 188.
[25] A. Bridy, “Confounding extremities: surgery at the
medico-ethical limits of self –modification”, The Journal of
Law, Medicine & Ethics, 32(1), 2004, pp 148-158.
[26] N. Levy, “Neuroethics”. Cambridge: University Press, 2007.
[27] S. Müller, “Body Integrity Identity Disorder (BIID) – Is it
possible to ethically justify the amputation of limbs?”, Transl. J.
Ethik in der Medizin, 20(4), 2008, pp 287-299. [Body Integrity
Identity Disorder (BIID) – Lassen sich Amputationen gesunder
Gliedmaßen ethisch rechtfertigen?].
[28] A. Manok, “Body Integrity Identity Disorder: the legitimacy of
amputations of healthy limbs“, Transl. B. Leipzig: Leipziger
Universitätsverlag, 2012. [Body Integrity Identity Disorder:
Die Zulässigkeit von Amputationen gesunder Gliedmaßen aus
rechtlicher Sicht].
[29] K. Nitschmann, (2007). “Surgery for the soul?”, Transl. J.
Zeitschrift für die gesamte Strafrechtswissenschaft, 119, 2007,
pp 547-592. [Chirurgie für die Seele?]
[30] D. Brang, P.D. McGeoch and V.S. Ramachandran,
„Apotemnophilia: a neurological disorder”, Neuro Report,
19(13), 2008, pp 1305-1306.
[31] A. Sedda, “Body Integrity Identity Disorder: from a
psychological to a neurological syndrome”, Neuropsychology
Review, 21(4), 2011, pp 334-336.
[32] D. Vitacco, L. Hilti and P. Brugger, “A neurological account of
Body Integrity Identity Disorder”, in Body Integrity Identity
Disorder: psychological, neurobiological, ethical and legal
aspects, A. Stirn, A. Thiel, S. Oddo, Eds. Lengerich: Pabst,
2009, pp 201-210.
[33] V.S. Ramachandran, “Adventures in behavioral
neurology—or—what neurology can tell us about human
nature”, http://edge.org/ conversation/
adventures_behavioral_neurology, 2012.
[34] P. Brugger, “The phantom limb in dreams”, Consciousness and
cognition, (17), 2008, pp 1272-1278.
[35] O. Sacks, “A Leg to Stand On”. London: Gerald Duckworth &
Co. Ltd, 1984.
[36] E. Kasten and A. Stirn,. “The wish for an amputation changes
from the right to the left site in Body Integrity Identity
Disorder”, Transl. J. Zeitschrift für Psychiatrie, Psychotherapie
und Psychologie, 57, 2009, pp 55-61. [Wechselnder
rechts-links-Amputationswunsch bei Body Integrity Identity
Disorder (BIID)].