🔴Zázraky medicíny (9/2025): Interview with Dr. Leandro Loriga on Body Integrity Dysphoria

Interview: Understanding Body Integrity Dysphoria (BID)

Can you start by telling us what Body Integrity Dysphoria (BID) is?

It is a medical condition that was only included in the International Classification of Diseases by the World Health Organization in 2019. Its core element is a strong internal sense of dysphoria or anxiety about the incongruence between how I perceive my own body and what it actually looks like. It is not 100% comparable, but it can be likened to gender incongruence. The difference is that BID is not tied to gender characteristics, but to a specific body part. One may feel a mismatch with one’s own leg, for example—so much so that it no longer feels like part of the body at all, creating the desire for its removal.

What causes this condition?

It is not entirely clear; there may be multiple factors, as with gender dysphoria—from biological to social. Although it is now recognised as a disease, there is still no established therapeutic approach, for example with medication. The few cases in which “solutions” have been reported, and which the medical community has become aware of, are people who achieved amputation through their own efforts—often through gruesome experiments. Some, for example, have induced frostbite until amputation was inevitable, while others have lain on train tracks. It seems the only intervention that truly helps is amputation, which permanently removes the unwanted body part.

There is historical evidence of a few cases where patients obtained amputation from a doctor, but otherwise such a solution is probably unthinkable, isn’t it?

Yes, amputation is illegal in Europe and the United States. So here we have a medical problem for which there is no official therapeutic solution. And if the “solution” for some is to lie under a train, that makes BID, in my opinion, a life-threatening medical condition. BID also raises the question of bodily autonomy. Before a routine operation, a person signs multiple forms of consent regarding interference with their bodily integrity. Yet if we are speaking about amputation, the person who requests it is automatically disqualified from that debate.

This disqualification is addressed in a chapter in your book where you ask whether the desire for amputation is a coercive force that limits or deprives a person of the ability to make free choices. You write: “If this desire is accepted as coercion, the individual with BID is considered to have no moral responsibility for the consequences. The intense desire for disability is considered coercion, thereby depriving the individual of autonomous decision-making, and the request for amputation is directly disqualifying.” Doesn’t that settle the question of whether amputation is a yes-or-no matter?

I build on the premise that if the desire for amputation is so strong and the person is suffering so severely that it blinds their judgement, then yes—we may say that they are incapable of clear thinking and of medical decision-making. However, BID’s intensity comes in waves. The question is why, when BID is manifesting only mildly and the person is able to think clearly about their body and their needs, can they not also make decisions at that time, retaining some degree of autonomy? Later, when BID strikes with full force and the person may be unable to think clearly—perhaps even threatening to jump from a window or harm themselves in another way—they are stripped of all say. This is precisely the dilemma people with BID raise.

How long have you been interested in this type of dysphoria?

I first encountered BID around 2012, when I was studying medical anthropology in Bologna, Italy, as part of a multidisciplinary group of doctors, psychologists, and sociologists. A colleague presented me with a paper on BID and I was immediately fascinated by the idea that someone might want to rid themselves of their own limb. I began to research it further and found virtually no literature. Even today, most scholarly work on BID is rooted in neurology or psychology. But I am primarily a medical anthropologist, so I am less interested in its origin and more concerned with the ethical question: if I am considered a healthy person by all other medical standards, why am I not allowed to remove a part of my body if doing so harms no one else? This is a fundamental issue, closely related to debates on euthanasia or abortion. As shocking as BID may sound at first, its implications are far-reaching.

How is BID defined medically? Is it a mental disorder?

No—BID is not a mental disorder, in the same way that homosexuality is not. If it were a mental disorder, it would necessarily impair one’s ability to think clearly about one’s body. Using the analogy of gender incongruence again: the ultimate solution there is often surgery. Were it defined as a mental disorder, we would face a major ethical impasse. It is more accurate to describe BID as a problem of embodiment—an incongruence between identity and the physical body.

Is there official data on the prevalence of BID?

Very little. In Germany, Professor Erich Kasten has conducted extensive research, but even so, data remain scarce and no official prevalence figures exist. Underdiagnosis is largely the result of stigma. In the past, BID was seen as a form of paraphilia, a sexual deviation. While perceptions have shifted—from a sexual issue, to an identity problem, to a dysphoria—the label of paraphilia has lingered. As a result, both the public and even professionals still often confuse BID with a fetish. This is inaccurate. Because of this stigma, people with BID have formed closed communities, often online, where they share experiences and, at times, dangerous DIY approaches to managing their condition.

And on the internet they even share instructions on how to lose a limb under a train?

Something like that. There is even a black market in amputations. In Europe, no one will amputate a healthy limb, so people travel abroad for such procedures. If they are lucky, they survive. But the medical guarantees and protections are weak there, and the surgeries are often carried out outside official hospital systems. Years ago, I joined these online forums and came to know people in them. More recently, I launched bodyintegritydysphoria.com, one of the first English-language communities raising awareness of BID.

How does BID manifest itself if the need is not fulfilled after the removal of the limb?

We call it a “condition”, but I am not sure that is the right word. Many in the BID community speak of it instead as an “identity”. Typically, it manifests quite early, often in adolescence, through discomfort and guilt. The individual sees themselves as healthy but still feels the desire for amputation, creating a contradiction between their inner reality and social expectations of what the body should be. This leads to reduced quality of life. Some cope by “pretending” to be disabled: spending a weekend in a wheelchair, or using a device that restricts a limb’s function. If, after removal, the dysphoria remains or shifts elsewhere, that creates a particularly difficult problem.

If we do not know the cause of BID, it must be even harder to diagnose—let alone treat—correctly, right?

Yes, especially since many doctors don’t even know that there is such a thing as BID or deny its existence and claim it’s just paraphilia. That’s very backwards thinking about a problem that is real. While I see a gradual change towards a more comprehensive understanding of BID, there is a need to spread awareness. People with BID are affected from a biological point of view, but also from a social point of view – they have a health problem, maybe congenital, we don’t know, but the people around them don’t believe it or don’t understand it, which leads them to resort to all sorts of dubious solutions. And even if there is a doctor who has some knowledge of BID, they still have to face the problem of amputation being a possible solution. We are faced with the question of how a procedure such as amputation could contribute positively to improving health. Even if a doctor acknowledges and understands that someone perceives their own leg as a foreign element and that they would feel better without it, they cannot simply amputate it if the leg is healthy and functional. The physiological aspect still takes precedence over the psychological one. But there’s nothing wrong with that. Because if we put psychology before physiology, we open up a whole series of other questions and potential problems. What would happen, for example, if we amputated someone’s leg on the basis of a wrong diagnosis?

When you have been in contact with people who pursued amputation themselves and succeeded, have you come across cases of regret?

In the few official cases recorded in the literature, there is no mention of regret. Once the amputation occurs, the unwanted body part is gone, and with it the dysphoria. There is no further desire for amputation. However, I have personally known a few who did regret their decision. Regret tends to arise when there has been misdiagnosis—something quite common. Once a new diagnostic category is introduced into the International Classification of Diseases, two things happen: doctors start diagnosing it more often, and individuals begin to self-identify with it more readily, even if they may not truly fit the criteria. For those with fragile identities, this can encourage “fitting into a box” that may not be theirs. If surgery follows under such circumstances—whether for BID or gender dysphoria—regret is almost inevitable over time.

The fact that amputation is irreversible makes the whole debate even more complex, doesn’t it?

Yes, and that is one reason why the analogy with gender dysphoria does not entirely hold. In gender dysphoria, the body is transformed into something else—a male body into a female one or vice versa. With BID, the body is not transformed but reduced: a part is simply removed.

What are the most common misconceptions about BID?

The most common is that it is a form of paraphilia. However, the International Classification of Diseases does not indicate any sexual connection. Nor is it a form of Body Dysmorphic Disorder (BDD), which is a condition where people are convinced about some kind of defect of their body. In contrast, people with BID are aware that their leg is healthy and functional, but perceive it as foreign. Also up for debate is the entrenched physiological idea that we can only feel healthy and thrive with two arms, two legs, and so on, and that any deviation from this standard is a pathology. I should point out that I’m not trying to advocate amputations here, that’s not my point. I’m just trying to point out a problem that has no easy solution. Is it better to wait until some form of therapy is available, which may be in ten years, or may be never? Or approach amputation as a possible solution? I know about people who have decided to talk about their difficulties with BID when they are in their fifties or sixties, after struggling with it all their lives…

How common is the assumption that BID is just a “fashion” trend? You mentioned social influence and identity, and body modification can play into that…

I do not believe BID is a fashion, but the cultural environment inevitably has an influence. As I argue in my book, we live in a postmodern age bombarded by images—from social media to television—each interpreted in our own way. This “image culture” influences identity: I may want to look like someone else because I dislike myself. Thus I am constantly negotiating who I am. Yet according to the International Classification of Diseases definition, this is not the case for BID, and based on my experience, I would agree. That said, we cannot rule out social influence altogether, since, as with gender dysphoria, we do not have a definitive explanation of its cause.

In your book, you discuss the tension between beneficence—acting for the patient’s good—and non-maleficence—avoiding harm. You also surveyed Czech doctors. How do they approach this contradiction?

I do not want to over-generalise, but paternalism still dominates in practice: the doctor is seen as knowing what is best. Slowly, a more collaborative model is emerging, in which doctor and patient negotiate a therapeutic approach together. It should not be a matter of the doctor commanding and the patient silently obeying, especially if such an approach contradicts the patient’s life goals. Among my respondents, the prevailing view was that if the body is physiologically functional, then it is the mind that must be “fixed”—and that being in a wheelchair is worse than psychological discomfort. But this view collapses when we consider that disability and impairment are not the same. Impairment is physical lack; disability is socially constructed, shaped by context. Someone missing a leg may not feel disabled at all—until they try to enter a post office and find there is no wheelchair access. This shows how simplistic the distinction is. The lived experience matters, and patronising people with impairments or mobility aids is unnecessary.

Do you think that, in time, BID will shed its stigma and people will no longer be afraid to talk about it?

My first wish is that both professionals and the public recognise it as a genuine condition—not a fetish, not a paraphilia—and that those with BID receive help rather than condemnation. Secondly, we must acknowledge the gaps in how human autonomy is judged in certain medical contexts. Only then can we begin to approach BID constructively, whether or not amputation becomes a legitimate solution. Again, I am not advocating amputations. But there must be some plan for therapeutic engagement with BID.

So that people with BID can go to a doctor without fear—without resorting to lying on train tracks or undergoing risky procedures abroad…

Exactly. What we need is dialogue between the medical community, the public, and people with BID. At present, this dialogue is missing—because of stigma, but also ignorance. Many people do not even know BID exists.