Hi @jason – interesting read. I imagine one of the main challenges is crafting a public “story,” especially when one has a family. I wonder how such a situation could be managed with close relatives? Being so deeply embedded in a social network might make things even harder if one hasn’t disclosed anything yet.

Elsewhere I speculated on something related (Loriga, 2025, pp. 15–16):
Using external devices—like crutches, orthotics, or prosthetics—not only changes how we function but how we perceive our bodies. These tools actively reshape body image and body schema, reinforcing a mental image of the desired body state through repetition and positive sensory feedback. In BID, this internalised image of the “ideal” impaired body becomes socially and neurologically ingrained, often enhanced through pretending behaviours. The result is a reinforced dissociation from the actual body—especially the unwanted limb.

On a related note, a recent VR study is very promising.
Saetta et al. (2025) showed that immersive VR, where BID individuals embody their desired (amputated) body, reduced both distress and hyperactivity in brain areas like the right superior parietal lobule. It also normalised disrupted brain connectivity in key networks. Importantly, participants reported a stronger sense of ownership and control—without increasing maladaptive desires. VR may well become a safe, cost-effective intervention to address BID-related dysphoria.

🧠✨ Saetta, G., Peter, Y., Ruddy, K., Ho, J. T., Luechinger, R., Cross, E., Michels, L., & Lenggenhager, B. (2025). Feeling at home in a virtually amputated body; neural and phenomenological effects of illusory embodiment in body integrity dysphoria. Journal of Psychiatric Research, 184, 395–404. https://doi.org/10.1016/j.jpsychires.2025.02.055
📘 Loriga, L. (2025). Body Integrity Dysphoria and the Ethical Dilemma of On-Demand Amputation: Redefining Wholeness: Identity, Autonomy, and the Moral Boundaries of the Human Body. Springer Nature Switzerland. https://doi.org/10.1007/978-3-031-82443-2

VR might be beneficial for someone with BID deal with the waves, but just like pretending/simming, it comes to an end. If it reaffirms one’s own need(s) it could be used as a tool to confirm the validity of surgery for said individual. I don’t think it would work for me although it would be neat to consciously see the outcome. My dreams can be so vivid and realistic that I already know what I want/need.

@jason You are right.  Summing with VR would allow people to get some idea of what it would be like, of course, as with pretending, once you stop, they realize you do not have the body you need.  I think I would like to try it to see what it would be like to be an amp.

The idea of ​​VR glasses actually seems like an interesting option for younger people who are just discovering BiD in themselves, or who don't really know for sure whether they have it. As an inexpensive diagnostic aid because there is something measurable. Trying out equipment like crutches, wheelchairs, braces, etc. helps sometimes, sometimes less with long-term use, and I speak from experience. They don't provide permanent protection against the dreaded waves. They are somewhat easier. However, with the aids, an intense wave can still occur, but less frequently. Aids can certainly delay an operation if it ultimately has to be carried out. There will certainly be many options that could be tried out in the future. Older patients who have been suffering from BiD for decades - will VR glasses help in the long term when two-thirds of the average lifespan is already over? Of course, aids are pretty expensive and insurance companies don't like anything that costs money. I don't expect that putting on VR glasses once a week and then using them for an hour will cure BiD. It would be a miracle. At best a short-term relief. It would certainly have to be a long-term one in order to rewrite the feelings, one's own consciousness and experiences. So that the brain and the person reboots. A little relief during the most difficult times is certainly better than none at all. In any case, I think it's good that there are people who really make a big effort and think about how they can help. Prof. Dr. Brugger (Switzerland) asked those affected more than 10 years ago, if there was a fairy godmother who could magically make a leg disappear or who could magically make the wish, the need or whatever it's called... disappear, which would you choose? A great question. You can guess the answer. BiD is very complex and deep.

Here is my KAFO. About 25 feet of 3K carbon fibre with aluminum/stainless steel drop locks. Took me a few months to acquire the materials and another few weeks to build. The pressure it takes off my knee and ankle is transferred to my thigh. With a shoe on I can walk fairly easily. I even go to work with it on. Because of the last cast on my leg, co-workers don’t pay much attention to it as they think it’s just part of the physio process. They have enquired and I just say “oh yeah, it’s fucked.” No real reaction from them afterwards.

By far, it is the best thing that I have experimented with other than my prosthetic. Reassuring that I am making the right choice. It is almost a miracle to help me with my current wave.

This is an impressive achievement and clearly shows what you have to come up with to make ends meet.
Great work with a lot of patience, impressive craftsmanship, knowledge of materials, not cheap, etc. Congratulations. I couldn't build that. But I think the best thing is that it can be permanently integrated into everyday life, so you get closer to yourself. An endurance test. Not just for 1 or 2 hours, or sometimes a day. With a fake prosthesis.
The best thing is that I don't have to make up big stories. All of this helps me a lot with my own BiD puzzle. And yet, it still hits me like a wave. Nobody knows me without my insoles anymore. Of course, at first, many people asked me what had happened and cited similar reasons to the one I used for my stroke. I had my first MRI scans in Frankfurt. But I didn't know any more details.
Until the Swiss MRI study came out in 2013 and the 2nd BiD Congress took place in Zurich. For me, the matter was actually clear. Well done. Since then, I've stopped making excuses and made it clear that it's neurological. My leg/arm doesn't do what I want. Everyone can think what they want. Basically, it's nobody's business. A lecture is overwhelming even for those asking questions.
In 2015, those affected met with a geneticist and a professor from Switzerland. Both initially looked at me questioningly. I explained to them why: to somehow suppress the emotional world and experience the impairment in everyday life as much as possible. This way, to minimize the suffering from BiD. The most important thing is that it helps me somewhat and doesn't pose as big an ethical problem as an amputation for the medical profession. An attempt at a compromise for both sides. With BiD, I no longer had any other choice. So I had to integrate it completely into my everyday life. Somehow. The scientists thought the KAFO and the arm were a smart idea. I'm no longer ashamed of BiD, but rather look for solutions.
Of course, I don't say BiD out loud to everyone. I just say one sentence: neurological – neurodivergent. Something in my brain isn't wired the way it should be. Very complicated. Nobody really wants to know the details. That's perfectly fine. That's roughly the direction. Any step that helps me avoid the worst ethical scenario is worth it. It's better than doing nothing and suffering in silence, always pretending everything's fine. Then I'd be an actor. I don't want to and can't do that anymore. BiD is difficult for everyone affected and not affected. Everyone with BiD looks for ways to minimize their suffering. No matter their age or severity. What is right and what is wrong? If that ultimately helps, it's a small step in the right direction. That should be okay, right? Similar to cross-dressing for gender dysphoria. My psychologist at the time in 2010/11 said, "That's the first time I've seen you laugh." It's a long road. If I'm lucky enough to get BiD surgery later, all I have to say is that I couldn't bear it anymore and had to go. No lie.

About the picture: When I stand up, my knee joint locks and becomes immobile. A bit of a hindrance, but a good compensation, as I still have feeling in my leg and my ankle is mobile, even though it's fixed by the adjustment. By operating the small levers on the left and right, I can bend my knee. I even had to take a driving test back then and am only allowed to drive with a KAFO or prosthesis. The whole package helps me cope better and has been with me legally for about 13 years. Two or three years ago, I had a KAFO made at my own expense. Private financing is very expensive. The KAFO must be on my affected limbs as much as necessary and possible, so that my leg doesn't feel anything from the outside. That's why it's closed as much as possible. If that's not the case, I feel overwhelmed. Without the KAFO and the arm splint, I wouldn't be able to cope with BiD. The thought of it is horrifying for me. I can't do anything for myself at the moment, not even legally. I can only thank you for all the help I've received so far. Prosthetics are, of course, three to four times as expensive. That's one of the problems.

@ admin. In German please delete. Thx. 

I used to sim after school when I was a latch-key kid in the mid-1990s.  Simming really only reaffirms bad feelings for me.  I've needed the right body configuration for so long now.  Simming induces the inevitable BID wave that follows. It unleashes the feelings, amplifying memories of a weight I've carried for so long.

Posted by: @3x-searching

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I used to sim after school when I was a latch-key kid in the mid-1990s.  Simming really only reaffirms bad feelings for me.  I've needed the right body configuration for so long now.  Simming induces the inevitable BID wave that follows. It unleashes the feelings, amplifying memories of a weight I've carried for so long.

Like role-playing online it gives a taste of what life would be like.  But you just can't experience the good stuff.