Have you ever thought about what would happen if you suddenly woke up one day and thought to yourself, “Wait, this arm doesn’t belong to me! Why is it attached to my body?”
Odd, right? Well, actually, not quite. It is a real issue, very rare, but real.
Most people get familiar with this condition from a very young age and decide to get an amputation. However, it is possible for the person to suddenly wake up one day feeling worse than ever about their limbs and want to perform an amputation themselves.
People have said how they felt about their bodies; for example, a man in his early thirties was rushed to the hospital with the thought of inflicting harm on himself by trying to cut off his arm from below the elbow. He mentioned that he knew exactly from which end of his elbow the rest of the arm felt estranged.
So, What Is This Condition?
Xenomelia, translated as ‘Xeno’, meaning foreign limb and ‘Melos’, meaning limb in Greek, generally meaning ‘foreign limb’, is a condition whose main characteristic is that a person feels estranged from a limb of their own body. It comes with a constant desire for them to want to amputate that particular part of the body. In simpler terms, it means that the person does not feel like a part of the body belongs to them, and it could be any part – the most common being the hands or the legs.
It was earlier known as body integrity disorder, meaning it was misconceived as a psychological or psychiatric disorder. Later, with more research, we found it to be untrue.
In physics, it is seen in certain circuits that the power supply is cut off when a circuit fails. Similarly, when some interconnections in the neurons fail, this rare phenomenon occurs somewhere in the nervous system. It is now believed that it is not completely psychological but linked to the nervous system’s circuit-like connections.
It makes the person believe strongly that the limb does not belong to them.
Let’s Trace Back to History of Xenomelia
Earlier it was not quite sure what could have caused this disorder, hence thinking it would be linked to psychological impairment. The first known issue of this kind dates back to the 1970s when the person wanted to get an amputation but felt no discomfort such as aches, pains, or any other issue. Several such cases came about, and they established a good team of researchers to study them.
According to recent research, some people who prefer to amputate a healthy limb than actively prevent bodily harm exhibit less of this behaviour’s preservation. It is significant to note that in most people, sensory abnormalities like intense pain or sensory deficiencies do not influence the target leg for amputation.
Additionally, a few of these people actively desire paralysis. Reports of people seeking sensory deprivations like blindness or deafness are much more uncommon. However, the urgent need to irreversibly harm an otherwise entire body unites all these situations.
Let us dive into the detailed, scientific explanation of the complex disorder in the simplest terms.
The Present Scenario on Xenomelia
The topic is still up for debate right now. Given that the majority of the methods that have been tried thus far have failed, determining whether the urge to amputate a healthy limb is of psychological/psychiatric or neurological origin will help guide the development of potential treatments.
Since the discovery of this disorder began, there have been debates on what truly drives the urges. Is it neurological, or is it psychological? Let’s take a look.
Psychiatric/Psychological Impact on Xenomelia
Tracing back to the first case ever penned down was when two men reportedly wanted to amputate their healthy left legs. They mentioned having started to feel estranged from those limbs from about the age of 11 and didn’t quite fathom what was driving this inane feeling of wanting to disown the limbs attached to them.
One interesting thing to note in these observations is that both men had sexual dysfunctions, such as both struggled with homosexuality, and back in those days, it was taboo to talk about. The researchers tried to link wanting to amputate legs with the fact that they were trying to retain some masculinity, even though they were bisexual.
Next, the condition was named apotemnophilia, which roughly translates to ‘the love for amputation’ in Greek, where ‘apo’ stands from away, ‘temno’ means a piece cut off, and ‘philia’ refers to love.
Interestingly, a paper on the same illness published a few years later offered a different explanation for apotemnophilia. The patient who was being discussed wanted to have one of his legs amputated.
The account outlined significant events in the patient’s life that were thought to have led to the desire: the patient’s encounter with a boy who had a wooden leg as a child. They noted that the patient grew fondness towards the boy and soon emerged his homosexual references. He believed that the boy with a wooden leg represented absolute and ideal happiness, which is why he started to use crutches, even though his leg was healthy.
According to reports, this person’s primary motivation for wanting to have his leg amputated was to improve their physical and mental wellbeing. The thing to notice this time was that the amputation was not for some sexual guilty feeling; it was to feel complete as a person.
After 2005 a huge amount of change came about. Doctors were taking multiple cases to study. This time, instead of trying to understand what was driving this condition, they were trying to chalk about some important things that they thought were influencers but were not.
It was argued that, for most people, sexual arousal is a secondary motivator; as a result, wanting an amputation cannot be classified as paraphilia. They also suggested that this desire not be classified as a body dysmorphic disorder; those who seek amputation understand that other people do not notice any flaws in the appearance of their limbs, and they accept this because they do not express complaints about the limb’s outward appearance.
These presumptions are the foundation for comparing gender identity disorder and the intention to amputate a limb. Take into account the numerous similarities between these disorders, such as the inability to accept a particular anatomical identity, the fact that childhood is the onset period, the fact that simulating the desire is an effective treatment method and the fact that paraphilic sexual arousal is attained through fictions of the desired identity.
In light of this, the author concluded that the term “apotemnophilia” is inappropriate and suggested the term “Body Integrity Identity Disorder” (BIID) instead, thinking that this condition may be an unordinary development of personality in which the sexual component does not play a major role.
Based on a comprehensive examination of fourteen case reports published in the literature, some researchers presented a set of criteria to identify the presence of BIID in 2012. We should emphasize that this analysis also included reports labelled as uncertain BIID, leaving the possibility that not all people, including psychiatric patients, would meet the suggested criteria. These authors defined twelve essential BIID (or apotemnophilia) characteristics in further detail, including:
- No psychiatric family history
- Born as a male
- No predetermined sexual preference
- Correlation between gender identity disorder and another paraphilia
- History of exposure to other amputees as a kid
- No association with trauma
- Self-amputation behaviours patterns
- Possible association.
Although these criteria fit well with the case reports examined, it is instantly apparent that they might not be appropriate for other situations mentioned. However, these were based on a limited number of patients, and it was further seen these do not apply to the other cases at all.
Neurological Impacts on Xenomelia
Scientists noticed that some cases did not match the criteria for psychological evaluation. It got doctors to think that there could truly be a connection with the brain – which was true.
As mentioned above, the brain is similar to a circuit. Ongoing research on the brain is very relevant to this order to understand how the brain could neurologically cut off some feeling for some part of the body and create an image in the person’s brain that they would want to remove the limb completely.
It is said that the cortical part of the brain could somehow be impacting these decisions. It includes the parietal lobe, responsible for somatosensory processing like touch, pain, temperature, and a sense of the limb position.
The scientists reasoned that because people with BIID demonstrate a left-sided preference for amputation, the urge to amputate a healthy limb is similar to somatoparaphrenia. A neuropsychological condition known as somatoparaphrenia typically develops following right hemisphere brain injury. In these situations, patients assert that they do not possess one limb, typically the left paralyzed arm, and that their right limb is someplace nearby.
Due to the method’s effects on the right parietal lobe, somatoparaphrenic patients have been shown to recover from abnormalities if they receive cold caloric vestibular stimulation (CVS).
A huge number of tests were conducted on several people for multiple years, closely monitoring people with the condition and the function of their brains. Over several years, they ran many tests. One common thing was that most of them were dominant on the left side of the brain and wanted to amputate a part of their left side, like their left leg or left arm. There was very less similarity between the two people who wanted to get an amputation.
The Future Direction of Xenomelia
This condition is very complex, and no proper explanation or one solid answer has been found yet. Although the explanation is correct, despite all the theoretical disputes, this ailment worsens with time, giving sufferers great distress and pushing them toward irreversible and final procedures.
It also tends to start extremely early in life. Therefore, additional research into this novel condition will unquestionably be worthwhile theoretically and in terms of its implications for ethics.
It does not seem that a clear division between the theories and methodologies of psychology/psychiatry and neuroscience is the best way to comprehend such a complex issue. On the other hand, combining neuroscientific and psychological/psychiatric approaches seems doable and desirable, albeit difficult, since all the detailed research study proves that one cannot be the only reason.
In this article, our goal was to summarise various studies on people who express a willingness to amputate one healthy limb, become paraplegic, or have other motor or sensory impairments.
The reader can grasp the changes in language that have been used during the 37 years which have already gone since the first report by comprehending the complexity of this ailment and seeing the ongoing controversy around it.
This semantic phenomenon reflects a change in the methodology used and, consequently, the various disciplines that have studied this condition. Authors began by using the term “apotemnophilia,” then switched to “BIID,” and most recently, “xenomelia.”
The last label stresses a more neuroscientific classification, while the first word emphasizes psychiatric/psychological characteristics. Between them, BIID resembles gender identity disorder while keeping the door open for a potential neurological link.
This nomenclature path emphasizes the lack of consensus regarding this ailment and the absence of a comprehensive and consistent strategy for understanding it.
Even when combined, neurological and mind-based approaches cannot explain xenomelia. Bodily self-consciousness is continuously formed by cultural norms about how one should look and how much body modification is acceptable.
Respecting the interaction between the brain, mind, and society is necessary to fully comprehend non-psychotic people’s sense of “being in the wrong body” and their desire to remedy the discrepancy between body and self by drastically altering the prototype, four-limbed corporeal structure.
In conclusion, study findings do not entirely agree and cannot be regarded as proof positive of a neurologic cause of BIID. Results from psychological and psychiatric investigations do not demonstrate a stronger case for sexual intent or an identity problem.