@Lefty, So well explained what people who suffer from BID go through.  I hope that we can get this through to the medical community about how debilitating BID is to a person who suffers and how achieving what one needs for their body is so much a relief for the dysphoria and pain of BID.  One thing, though, one should not feel ashamed for suffering from BID, it is not a choice.

Powerful story, @lefty—thank you for sharing.

It reminded me of some of the work of Primo Levi—The Drowned and the Saved, or even If This Is a Man. A Holocaust survivor, Levi meticulously reflected on the experience of survivor’s guilt—being caught between two worlds: the expectation to feel grateful for being alive, and the crushing burden of memory and shame for having survived. Levi took his own life (allegedly) just one year after The Drowned and the Saved was published. I do not, of course, wish to draw a direct comparison between such vastly different experiences. However, I cannot help but wonder whether the underlying psychological mechanisms might, to some extent, be comparable. Similar patterns of shame, internalised stigma, and identity conflict have been observed, for example, within the homosexual community—particularly when homosexuality was criminalised and pathologised. (See, for example, Alan Downs – The Velvet Rage: Overcoming the Pain of Growing Up Gay in a Straight Man's World.) Long story short: while the contexts are clearly distinct, the underlying psychological triggers may very well share common structures. Food for thought, perhaps, for colleagues in the psychological sciences.

Regarding the passage on the persistent wish for impairment, and finally being able to come to terms with oneself—some important points arise that are worth exploring further. For instance: Who would fund the surgery? You, or the healthcare system? These aren’t just rhetorical questions.

If the answer is you, then we would classify BiD-related amputation as an elective procedure—akin, in some ways, to certain types of cosmetic surgery (though it’s worth noting that cosmetic surgery is, in some cases, covered by the statutory healthcare system when it addresses psychological discomfort).

If the answer is the healthcare system, then BiD becomes grounds for a non-elective intervention—meaning that post-op costs should logically also be covered by the system.

One of the most frequently raised arguments against surgery—and against the classification of BiD procedures as non-elective, in my experience—concerns the risk of regret (typically following misdiagnosis), post-operative complications (even where no misdiagnosis has occurred), and the idea that BiD surgery is not life-saving.

The regret objection is surely valid in cases of misdiagnosis—when one believes they have BiD, but in fact do not. In such cases, the person realises post-amputation that their discomfort persists, stemming from a source other than the limb or body part affected. In case of a genuine BiD sufferer, such arguments, however, can be disqualified. 

The post-operative complication argument is also worth addressing. Given your testimony, one might reasonably ask: is it better to risk possible post-op complications (which may not occur at all), or to remain indefinitely in a state of dysphoria that impacts every other facet of one’s life?

As for the claim that BiD surgery is not life-saving in the same way that, say, a craniotomy for a haemorrhagic stroke or an appendectomy might be—is that entirely accurate? If someone lays down on a train track to attempt DIY "treatment" in desperation, can we still argue that their life is not in danger? The notion that surgery isn't life-saving only holds if we ignore what people may resort to when they are denied medical recognition or assistance. Beyond DIY and practically life-ending circumstances, what about quality of life? Death might very well be a social event—the severing of relationships, the collapse of social expectations, and the cessation of pursuing life plans or flourishing—not necessarily a physical experience.

A final thought on shame—and the power of sharing. Carrying such profound dysphoria, topped by the burden of guilt and shame rooted in the stigma surrounding the condition—largely due to widespread misunderstanding—can be soul-crushing and isolating.

Your comment about how sharing your story gave you strength to push through, and a voice to speak your truth worth highlighting. I believe this is indeed the right path to change. I understand the need for hidden or gated communities for support and safety due to the high stigma of the condition, but, as I’ve said elsewhere, for genuine change to occur, meaningful dialogue must follow.

Final word—thank you. This is a truly powerful testimony and so well articulated.

@leandro I would say the healthcare system should pay for the proper treatment of BID. It is not cosmetic surgery any more than trans surgery is, though I do not know if they pay for trans surgery or not. People suffer from BID, and they need help and the ability to get affirming surgery. 

As far as misdiagnosing, that could be a problem.  If the psychiatrist fully understands how to diagnose BID, there are clear signs of it, but one must be fully accredited with understanding all the signs of someone suffering from BID.  They must be able to know it is not something else.  It is possible to diagnose BID properly, but one must fully understand how to do so.

Shame I have carried for over five decades because I knew then that I should appreciate what I have. It wasn’t until I saw one therapist recently who suggested that I had no choice in the matter. Her take on it was that whatever was happening to me started in vitro. That one comment made me feel validated that it wasn’t my “fault”. It did rejuvenate my feelings about perusing the path I was on in getting proper help. 

@jason Of course, it's not your fault, but you have a need that is hard to achieve.  You should not be ashamed of it either, but of course, getting anyone outside the BID community to understand is a whole other story.

As John said, you are not to blame for suffering from an illness. Unfortunately, this is often told to us by people who do not truly understand what BiD is or who accuse us of merely seeking attention. These misunderstandings caused feelings of shame in me. How did I confront my shame? By speaking openly about it in the right settings. In my opinion, the term "need" is the first concept that comes into play in medical treatment. However, a need develops from suffering—when the afflicted person recognizes the pain they experience. Then a need arises, for instance: "I need to go to the doctor and require healing or relief." A good doctor acknowledges this need for healing by recognizing it as a call to action. It is then in their hands to determine how to respond to the need, guided by various evidence-based medical principles.

And here lies our challenge. In my view, a "need" conveys far less urgency than a "demand." For instance, I might have the need for my bank account to be overflowing with funds. While you can ask someone to make that happen, the likelihood of success is minimal. That would require a benefactor. A need arises when you feel or realize that you require or want something. For example, a person might need healing for Illness X because they suffer from pain. The doctor acknowledges the need and seeks to provide relief. The need transforms into a demand—healing becomes a necessity. This is the obligation of a good doctor. Yet, as we know, success isn’t always guaranteed.

The real problem is that there is currently no recognized, evidence-based treatment for BiD. While the condition is understood, legal and viable treatment options remain unavailable. This dilemma should not rest solely on the doctor’s shoulders—they are essentially navigating blindfolded, armed with a diagnosis but lacking clear guidelines. As a patient, rejection often follows, which inevitably leads to further suffering or even worsens the situation. Sufferers must brace for this outcome. For doctors, it poses a moral and professional challenge: "Should I help or not? If yes, how? Can I reconcile this with my conscience?" And so forth. These questions reflect a significant ethical issue—one that is deeply taxing for all involved.

For us sufferers, the solution feels relatively straightforward: simply act, and move forward. We are decades ahead in our understanding of BiD. However, for doctors, the topic remains a daunting challenge. They want to heal but don’t know how. Informing doctors about BiD is crucial to illustrate its seriousness and dispel misconceptions that it might be a passing whim. Through this process, I was able to overcome my shame, not only with doctors but also with my loved ones. This journey gradually unfolded, almost organically. At first, I endured verbal criticism and doubt—but I pressed on.

It was deeply painful—both emotionally and otherwise—to explain my situation to my general practitioner. I remained patient, though, as they genuinely wanted to see me improve. Since I began wearing orthoses, which make my actual disability more visible and somewhat tangible, I’ve found relief over the years. From my experience, the simplest way to start the conversation was: "It’s somewhat similar to gender dysphoria, but the effects are ultimately different—perhaps just a comparison." I made sure to present each doctor with scientific documents to substantiate my case.

The benefit of engaging with doctors? It gives you a good feeling to talk to them about BiD and, over time, to be taken seriously. Slowly but surely, BiD gains broader awareness. Convincing a doctor to prescribe or take action remains challenging, but with persistence, they might eventually respond: "Alright, we can manage this to improve your well-being—no problem." Involving a psychologist can reassure the doctor that your pursuit of healing or relief is genuine. Achieving such progress takes time. With BiD's inclusion in ICD-11 and its connection to the  ------ https://www.orpha.net/en/disease/detail/623789?name=K%C3%B6rperintegrit%C3%A4ts-Dysphorie&mode=name

-----  awareness among psychologists and doctors will steadily increase with each case they encounter.

When I initially discussed BiD with my general practitioner, they turned pale. My first psychiatrist, whom I presented scientific reports to, literally jumped out of their chair, exclaiming: "Always something new! What nonsense is this!" This reaction was a shock. Today, thanks to my efforts, my general practitioner is well-informed. Progress simply takes time. Don’t overwhelm your doctor. Overcoming shame is incredibly difficult for us sufferers because we know how misunderstood and stigmatized our condition often is. 

I hope it helps a bit. 

@leandro Who would fund the surgery? You, or the healthcare system? 

What kind of brainstorming. 

Hypothetical answer:  

If I had the financial means to cover the surgery and all possible subsequent costs myself, I would finance it privately. The reasoning is simple: the suffering caused by BiD is immense, and measures to alleviate it would be worth the investment. However, not everyone has the necessary resources, which raises the question of whether the healthcare system should step in.

Since BiD is a recognized condition that no one chose but has presumably existed for much longer (the first documented case, around 1785, involved a surgeon who was threatened at gunpoint. After the successful operation, the now one-legged patient expressed their gratitude with a heartfelt letter and a generous reward. This was presumably a case of BiD), it should be covered by the healthcare system. But...

For the healthcare system to finance such surgeries, BiD would need to be widely recognized as a legitimate and treatable condition. This requires extensive research, advocacy, and the development of evidence-based guidelines. If it is acknowledged that the condition causes significant psychological and physical distress, healthcare systems in some countries might consider funding the costs, similar to treatments for other conditions like gender dysphoria. The financial feasibility of such procedures within the healthcare system was roughly estimated in a study, indicating that it may not be as impractical as commonly assumed.

In any medical context, treatment should not only aim to alleviate symptoms but also to reduce suffering and improve quality of life. But what does "improving quality of life" mean in the context of BiD? These are difficult and complex questions.

For individuals with BiD, everything seems reversed compared to societal norms. Generally, amputation is perceived as a loss, an illness, or even as something from which one can never truly recover. However, for people with BiD, it represents health, completeness, and a path to well-being. Such paradoxes challenge conventional understanding and force us to reconsider what "normal" or "healthy" truly means. It is also important to note that BiD is very rare. Various estimates exist in this regard.

Interesting take, and I agree—if one had the financial means, it's a rational choice to cover the costs privately. But this brings to a deeper question: if BID is accepted as a life-threatening condition (and I believe it is), should access to treatment depend on one's economic means?

Allowing only those with financial privilege to access surgery turns healthcare from a shared right into a private luxury. It turns treatment into a commodity rather than a right. It would be like saying:

You have a genetic heart condition such as hypertrophic cardiomyopathy, which can lead to sudden cardiac death if left untreated—but since you cannot afford the necessary procedure or medication, there’s nothing to be done

The individual is not only penalised from a biological perspective (simply for having drawn the short straw in the genetic lottery, while others continue unaffected), but also from a social perspective, due to lacking the resources to have it removed. The result may be death—not because treatment is unavailable, but because it is inaccessible.

Failing to offer publicly funded treatment to what is recognised as a life-threatening condition (and again, not just in the purely biological sense) is not a neutral stance; it is a harmful one. Recognition without action becomes a form of neglect, and arguably, a form of institutionalised injustice.

@leandro, it seems like you are learning a lot from the limited number of people posting here.  Too bad more people have not signed up to come here yet.  I think you will hear similar stories from most others.  There are a lot of people on these forums, but it seems like they talk about the need for research, but they do not want to participate.  

I hope you get the medical community on here to read people's stories.  Maybe it will open some eyes to what it is like suffering from BID.  

Posted by: @leandro

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if BID is accepted as a life-threatening condition (and I believe it is), should access to treatment depend on one's economic means?

This should not happen, yet unfortunately, it is sometimes the case with BID. There seems to be nothing that doesn’t exist. I fully agree with your argument and also find it unfair. In general, such a system would be ruthless, and the idea of a solidarity-based community – depending on the country – would be obsolete.

Depression and BID: Two potentially life-threatening conditions

Depression is now relatively easy to treat and is socially acknowledged, yet it can still be a potentially fatal illness – although this is not always the case. However, if depression is recognized too late, it can have tragic consequences. Similarly, BID can lead to fatal self-harm if the condition is not identified in time. A concurrent depression is not excluded, which would be described as comorbidity. Mathematically speaking, this could even double the potential life-threatening risk.

A tragic example: The case of Innisfail

A particularly tragic case is that of Innisfail, which ended fatally and is presumably linked to BID. The affected person apparently never spoke to anyone about it – not friends, not family, nor a doctor. Such exceptions should not happen in the future. It remains unclear how many people in their deepest despair have died accidentally due to BID, with these cases possibly being declared as suicide. One might imagine someone in their desperation attempting to lie in front of a train in order to lose a limb – a harrowing thought that underscores the urgency of adequate treatment.

Recognition and treatment options for BID

BID must be recognized as a serious condition, and treatment options without stigmatization should be offered – tailored to the severity and type of each case. Patients should have choices, decided jointly with them, so they feel comfortable with their chosen option. A treatment dictated from above could be counterproductive and fail in the worst-case scenario.

Future perspectives

Perhaps in the future, medications will be available that target the affected areas of the brain and alleviate BID, similar to treatments for depression. Some patients might only need simple aids, while for others, only the ultima ratio would help. However, decades might pass before this becomes reality, and it may remain wishful thinking.

Conclusion

Although BID appears to be rare, the dark figure remains unknown – often due to fear of stigmatization or being labeled as "crazy." To avoid misdiagnosis, an interdisciplinary team that has thoroughly studied BID is undoubtedly needed. A wrong surgical treatment could deeply affect all parties involved (and affected), especially the surgeon, causing serious consequences. What has been removed cannot be restored. Residual risks remain and can never be completely ruled out.

Final thought

BID should unquestionably be recognized by the solidarity community – regardless of which type of therapy is chosen or offered.