I agree that the medical community, at least a significant portion of it, based on my interactions, does not yet adequately understand BID. Nonetheless, I remain optimistic. I see an opening, a willingness to engage in dialogue, albeit cautiously. It is important to understand what is being asked: the removal of a physiologically healthy limb in response to a condition that is generally regarded as psychological in origin, despite emerging evidence suggesting underlying neurological and biological correlates.

When discussing psychological conditions and irreversible surgical interventions, scepticism is an understandable default position. One contributing factor is that psychology cannot be visualised under a microscope, while physiology remains, in many clinicians’ eyes, the primary and superordinate domain. This epistemological hierarchy continues to shape how conditions like BID are received.

In my view, there are two critical elements necessary to advance the discourse around BID:

1. Diagnostic clarity – There must be clearly defined and widely accepted diagnostic criteria to recognise and reliably diagnose BID. Whether or not the ICD-11 criteria are considered sufficient is a separate matter. The very inclusion in the ICD is important, but broader consensus on the condition—ideally including its future recognition within the DSM—would be enormously beneficial.

2. Outcome-based evidence – We must gather robust, statistically grounded evidence assessing outcomes across treatment modalities. Specifically, among individuals properly diagnosed with BID, what are the effects of psychological and pharmacological interventions? If the data indicate a consistent lack of efficacy in relieving dysphoria through these means, such approaches may reasonably be ruled out as viable long-term treatments.

Here, however, lies another critical challenge: even if these interventions are shown to be ineffective, this alone is not sufficient grounds to justify surgical intervention. Arguing that surgery is the logical next step simply because options A and B have failed would be akin to saying, Since diet and exercise haven’t helped me lose weight, I’ll resort to removing an organ. The severity and irreversibility of the intervention demand a different type of justification—one that does not rely solely on the exhaustion of other options.

Instead, the justification for surgery must be rooted in a robust ethical framework: the capacity of the individual to make meaningful, informed decisions about their own future; the recognition of the person as an autonomous agent; and the awareness of that agent to evaluate and exit a state in which their life is significantly impaired. This includes demonstrating the consistency, persistence, and rational coherence of the request over time.

Within this kind of structured, evidence-led framework, surgical intervention—such as amputation—may emerge as a last-resort option, in a manner analogous to the role of Sex Reassignment Surgery in the treatment of Gender Dysphoria.

I hope this platform and our collaborative efforts will serve two key functions:

1. Public-facing engagement – To raise awareness of BID, correct misconceptions, and challenge the stigma and criminalisation that still surround it. BID must be addressed as a legitimate medical condition, not penalised or pathologised without nuance.

2. Scientific integration – To establish a coordinated, multidisciplinary research network. Rather than isolated academic clusters, we need a unified reference point to guide research in a coherent direction. This network should also play a translational role: converting complex medical findings into clear, actionable frameworks that can be communicated to the public and policymakers alike.

Equally important is gaining and sustaining the trust of the BID community itself. Historically, the community has had to operate in gated spaces, out of necessity and for protection. While these spaces may still be essential for many, more voices must emerge, and when they do, they must not be ignored. 

It is undoubtedly an ambitious endeavour—and perhaps even a presumptuous one—but progress and change must start somewhere.

The thing that I am getting at is not so much that at this time they will not give affirming surgery, but they do not even want to know what BIID is all about and how people suffer.  I believe I have given you what I wrote on Reddit's medical subreddits.  Here is what I wore there, and it got deleted by all but one subreddit.  I did not ask for surgery, but I tried to explain what BIID was and how people suffer.  They did not want to hear it, and I got nasty comments.  They did not want to know about it, and that is my point.  Here is this post on DeviantArt: 

https://www.deviantart.com/johnsc2/art/I-want-to-discuss-what-BIID-is-all-about-1118429648.

Hi John,

Yes, I encountered very similar situations myself, which were borderline surreal. Not only was there a straightforward rejection based on BID, but also a clear blockage when it came to even initiating a dialogue. While conducting interviews with some M.D.s—despite being scheduled well in advance—I was more than once greeted with a harsh attitude and blatantly dismissed.

Although such interactions are part of the job when doing qualitative research, I couldn't help but wonder what would prompt someone to shut down so completely. I suspect that certain people find the idea of BID strikes a sensitive chord, one perhaps made even more delicate by the nature of their profession as physicians.

That said, I must add that although I encountered such responses from some M.Ds, I also met others—I'd say the majority—who were actually open to dialogue. In short, I believe BID is so unique that one simply cannot remain neutral. It's not something you can respond to without evoking a strong reaction, whether that's surprise, curiosity, or outright rejection.

Regarding Reddit's medical subreddits, I would be curious to know the reason they gave for deleting your post and what the reasoning behind that decision might have been. Maybe that's something we can explore more in DMs.

Yes, one's BID needs are just so crazy; it is hard for people outside the BID community to accept.  At least they should be open to reading what I said, but all they did was attack me when it was still on there.  One of the worst attacks came from a Neurologist who should have known better.  When I gave him the link to the not-yet-released ICD-11 entry, he deleted his comments, making him look like a fool.

Not sure why they deleted it.  For one thing, I was not in the medical field, so I was intruding.  When I posted on r/medical, which I guess is for doctors to talk amongst themselves, it did not even get to the point of posting, and one of the automods deleted it, saying I broke some of the rules.  The others just got deleted for no reason.  Not being a doctor and talking about something they did not want to know was enough to delete them.  It is still up there on one of the psychiatrists' subreddit and got 1.5K views and no comments.

The thing is, they think they know enough, and they do not want to know anything more.  As far as they are concerned, we are delusional and need therapy and drugs.  They believe it to be the same as BDD, which has no relationship to.  They say they will not give surgery for a delusion, and that is pointed out when someone freezes their limb, and they say it was because of BIID, they will refuse to amputate.  We have cases like that.  Now, everyone who does it knows to find some other reason they did, but not BIID,

The topic of BIID (Body Integrity Identity Disorder) is emotionally charged for many doctors, especially when they hear about it for the first time and lack any knowledge about it. In the U.S., the situation is particularly challenging because BIID is not included in the DSM, a classification system that holds significant importance and is widely regarded. This absence makes it even harder for those affected to find understanding and support. Often, all it takes is a listening ear—even if it's just for two minutes. Listening is essential when it comes to BIID.

I vividly remember the time I needed orthopedic shoes for my KAFO (Knee Ankle Foot Orthosis) leg. My first orthopedist was incredibly empathetic and always listened to me, even though BIID was not yet recognized in the ICD (International Classification of Diseases) at that time. However, I eventually had to visit a different orthopedist, bringing along all my fears and worries. I sincerely hoped things would go well.

With a trembling voice, I explained to him that I had a ridiculous request—something that essentially doesn’t exist—and that I needed his help. Together with the medical assistant, he listened to me attentively for maybe two minutes. During this time, literature on BIID was still very scarce; I showed him a title by Prof. Brugger, which read something like: “Bizarre quirk, identity disorder, neurological condition, or something else entirely?” I don’t recall the exact title anymore, but it was something along those lines.

I mentioned that BIID is somewhat comparable to Gender Identity Disorder, yet different. I added that I was at the end of my strength. His reaction was remarkable—he showed genuine interest. In that moment, I was on the verge of breaking down in tears, terrified of being rejected or thrown out of the practice.

Then something unique happened—a small miracle. The doctor sat down and started googling. After just five seconds, he said verbatim: “Of course it exists, it’s right here!” I couldn’t believe my ears. Within moments, I had a prescription for orthopedic shoes in my hand, with BIID listed as the sole diagnosis. With a smile, the doctor went into the next treatment room, leaving me in the office with the medical assistant for a few seconds longer. She appeared affected and said to me: “That’s awful. But it’s good that it has finally come out for you.” She smiled.

This experience brought me immense relief—an overwhelming sense of liberation. Perhaps it was luck, coincidence, or simply the right words at the right time. Maybe the KAFO I wore helped too, as people’s eyes automatically gravitate toward it, making it impossible to hide.

Since then, I’ve had numerous encounters with doctors where BIID became the topic of discussion. Whether it was at the eye doctor, ENT, dentist, or endocrinologist, many asked me at the beginning of each conversation why I wear the orthoses. Naturally, the question is important for medical reasons, as it influences the choice of treatment. But these questions often led to unintended conversations about BIID. What reason would I have to come up with excuses?

One particularly noteworthy experience involved an ENT doctor. After asking about my orthoses, I explained briefly what BIID is and referred him to DIMDI (a former proposal system for ICD-10) to look it up. He quickly checked, skimmed the information, and remarked, “What a mess. I wouldn’t want to be in your shoes.” Then he continued with the treatment for which I had come.

Over the years, I developed a certain routine through numerous small conversations with doctors. Maybe it was simply luck in many situations. But one thing is certain: I have largely overcome my fear of speaking about BIID with doctors, though some discomfort always remains.

When I visit new doctors, I always bring the most important documents with me and hand them over to the doctor. They usually take a quick look, and the ice is broken. Step by step, things have evolved. But until I got to this point, it was a hellish ride.

My Advice. 

For me, it was crucial to fight like a lion to be heard and to improve my life. My best advice for others affected by BIID is:

• Talk to doctors: Be open and explain briefly what BIID means to you. Show that you have tried every possible option to alleviate the suffering.

• Request help: Ask for help that the doctor can ethically and legally support, especially in case insurance asks questions later.

• Communicate clearly: Amputations are often not justifiable and can lead to legal and moral complications for the doctor. It’s crucial to focus on realistic solutions that work for both parties.

The path to acceptance is long and difficult, but for us, there’s ultimately no other choice but to fight. Every small positive encounter matters and gives strength to keep moving forward. BiD ist really hard. 

Excellent advice, lefty! I still have an emotional reaction when I discuss my issues with a new doctor. It is not easy.

As for the “harsh” responses from some doctors, it has happened to me. My wife was present for such treatment once. I had a real medical problem (inguinal pain from a hernia repair) and when the specialist asked me about it, he dismissed everything that I had described as “it’s all in your head” when it came to the actual medical issue. I had been completely honest in the initial intake form describing my symptoms and mentioned that it compounded my depression and anxiety about BID. I abruptly ended my appointment even though it took months to get and the travel involved. My wife was horrified by his response. Here’s the kicker, he wanted me to make another appointment with him to address the actual medical issue. I said “no thank you” as I walked out in disbelief. “What an arrogant asshole!” was her first reply to me.

Not the first time I’ve had a negative reaction from the medical community. I can divulge further but I digress as it is still triggering for me. Had a surgeon recently ask me about my psychological issues but I just acknowledged them without going into detail and we quickly moved on to the actual reason I was there for, the Inguinodynia. Surgery for that shortly followed however.