My supposition on body integrity identity disorder (biid)

I'll just dive right in and get to the point I'd like to make, which at first may make not much sense at all to some.

Right now it doesn't even seem to make much sense to me, but I plead with you to bear with me for the next few minutes while I attempt to make it make sense.

Right now, my fairly uneducated theory about what causes, at least the desire to have a limb amputated due to biid is.
Let me pause for second to say that biid at this time also applies to those with other desire such as paraplegia, blindness or deafness.

At this point in time I'm going focus on those who want to have their limb amputated, as I am one of those, I however do plan on putting forward my theories about the former at a latter time, but I digress.

So, my theory is that of which could be said to be somewhat of the opposite of  the phantom limb syndrome.

I know that probably doesn't make much sense at face value, and I'm also not to sure of how to explain it further, especially coherently, so bear with me as I try to.

First I think it be important to establish the basics of what the phantom limb syndrome basically implies, or is. From my limited understanding is that brain still has the impression or image of that limb which was amputated still being present, and sometimes even to the point of being able to move said phantom limb as well as receiving feedback that the limb has actually moved.

Perhaps that the cause of biid (at least for those who want/need amputation) is the opposite of what the phantom limb syndrome is.

My somewhat uneducated (at least professionally uneducated) opinion is that the brain has the impression that a limb is missing where it is in fact physically present.

I know that at least to some this may seem odd, especially considering that those who have biid seem to be able to have full function of the limb(s) in question.

Which at least to me, and probably other, leads to the question of "If the brain thinks that the limb missing, how does it send the signals for it to function?"

After a few thoughts on how to answer that question, I think the better question might be why instead of how.

As for how, the nervous system is still there and somewhat functional, at least especially for the outgoing messages. As for why I say the outgoing messages, is well the limb still moves and functions, at least to that extent.

However based on my own observations of my own limb seem to me that the incoming signals are obstructed one way or another. Again, let me pause to say that I'm not saying outgoing messages aren't affected either, and that I may just be over analyzing things as I oft tend to do.

For example, from what I can tell from most people is that when going down stairs it appears that they use the pressure or touch of the next stair on their foot to tell them that their foot/leg is on solid ground, so they than take the next step.

However, for me, not saying that this does or doesn't apply to others with biid as I can not nor do I speak for them. For me, at least I have to use the pressure from the upper thigh or hip to tell me that the foot is on the next step. The rest of the leg essentially feels like dead weight, although that isn't exactly what it feels like but the closest word I could think of to somewhat describe it.

Again, yes having it feel like dead weight can seem strange as those with biid can usually feel/respond to touch from the affected limb. Maybe we should call it the Paradoxical Disorder as it seems to be full of paradoxes, especially to 'normal' people, heck even to me sometimes.

Which presents yet another paradox, if one can feel/respond to touch how can they not feel or respond to pressure or touch.  Well, that is a tough one to answer even for me, maybe it's the pressure alone, the type of touch/pressure,  a lag between the affected limb and the brain, or maybe even the brain with the help of the eyes taught itself that this unknown signal somehow relates to the affected limb, but doesn't know how to process it further than that. I haven't pondered it enough to come to any solid conclusion I would think it might be, but I'm am leaning towards the last of those options at this point.

 As for the outgoing signals from the brain to that limb, I've noticed that the affected limb, at least for me, is usually the hardest one coordinate and move, again having it essentially feel like dead weight, again the feeling isn't quite like that, but is the closest word I could come up with to at least poorly attempt to convey the feeling.

As for why the brain would send out those signals is, well, that's a hard one. Well, why does the brain send the signals to move a phantom limb. That's an easier one to answer, it thinks the limb is still there. As for the case of biid the brain thinks the limb is not there but still sends out the signal. Just one of numerous paradoxes with biid it seems.

For what I can come up with for now, is that perhaps the parts of the brains that send out the signal to move the limb, and that part that thinks that the limb is absent aren't connected and don't communicate with each other. That's the best (uneducated) answer I can come up with.

As for why one might become stressed/distressed/depressed/suicidal, and the desperateness to remove the affected limb from biid is, well, I believe there to be quite a few reasons, each either linked to one of those or several. At this point I think it might be easier to answer all of those as if they were one.

However, I think we should start with somewhat of a though experiment, which I would think might help in better understanding where those with biid come from.

Okay, imagine you have an invisible but very real thirty pound ball attached to your leg twenty-four hours a day, seven days a week, three hundred and sixty five days year, for say twenty years.

The ball is heavy, and you have to drag it with you whenever you wanted to go anywhere,  go for walk, you have to drag those thirty pounds with you, go up a flight of stair up goes that ball. Go use the lavatory, the ball comes along, rollover in bed, you've got to lift that ball up and over. Each day the ball seems to get heavier and heavier


Now wouldn't that be a stressful experience to have to go through, just by itself?

Now imagine, that in addition to those, that ball sends a shock/signal up through the leg, up to your brain, and your brain spends energy trying to figure out what to do and where to place that shock/signal, with no place to put it. Again twenty-four hour a day seven days a week, and so on...

Now how stressful, distressing is it.

And the worst part is, that all your thoughts are about that ball and how to get rid of it

Oh, and you can't do a darn thing about it, nobody's willing to do a thing about it, except putting you on drugs that don't do a thing about it, or sometime makes it worse, now how much more depressing/stressing is it?

You try to tell someone about it, they call you insane and say you need to get help.

The only help and relief is to have the ball removed.

You go to your doctor and attempt to explain your problem and what you want and need.

You need the ball removed.

You ask him to remove the ball he refuses, and says your insane and sends you to a psychiatrist/psychologist.

They put you on some drugs to treat your psychosis.

It doesn't help one bit, so you get depressed.

They put you on another drug to treat you depression.

Again it doesn't help one bit, the thirty pound ball is still there.

You go back to the doctor explain that the attempted treatments didn't help.

You ask him again to remove the ball.

He still refuses.

You state that if he doesn't remove the ball your either going to remove the ball yourself or commit suicide.

He still refuses stating "Primum non nocere"("first do no harm").

So now what do you do?

Do you remove the ball yourself?

Do you go on through life with the ball still there getting heavier by the day?

Do you commit suicide?

Do you.....?


This isn't an exact feeling or experience, but it was the closest thing I could think of that would somehow convey at least somewhat of what the problems with this disorder are.

Perhaps now you might have a small taste of what those with biid have to go through (at least for me it seems). Unfortunately, you probably won't find this post by yourself unless you already know what it feels like, and could probably also give a better example.


As for my opinion for amputation as a viable treatment is as follow:

1. There seems to be no effective treatment other than said amputation

2. The other possible treatment, which is probably still a ways off at best, would be, dare I say brain surgery, since drugs usually used to correct vaguely seemingly similar disorders do nothing to correct the problem, and it could very well be the structure of the brain itself, which seems to usually be somewhat different from person to person. Yes, I know, extreme example

3. I would believe amputation of a couple of limbs would be far safer than an unknown surgical procedure on the brain, which seems to have a higher probability of more harm, i.e. leaving the patient completely paralyzed, having to resort to a respirator for the rest of their lives. Not to say that these same possibilities don't exist in the amputation but the probability is quite less than brain surgery. Yes, I know this is another extreme example, and isn't currently a viable option.

4. Their either going to commit suicide,  perform the requested amputation on themselves, or cause the requested amputation to be done on themselves sooner or latter. All of which has the greater potential to cause more harm than if it were done in a sterile environment with skilled and trained hands performing the amputation.

5. Those who've had the requested amputation (or to a close proximity of it), are a lot happier and even more productive than before, and no longer have the desire to remove the "ball," as the 'ball' is no longer present (based anecdotal evidence).

6. There seems to be little effort put forward to attempt to find another treatment. And with said effort that are being put forward they seem to not have much support in their endeavors. And as such such other treatment are a ways a off, and that is if they ever come to fruition. Meanwhile people who suffer from biid die from suicide due to refusal to adequately help their problems, they die from attempting said amputation themselves, or they do more harm to themselves from trying to get the limb in such a state that it must be amputated.

Sometimes, the surgeons are able to repair or reattach the limb, but this doesn't come without cost, as months of physical therapy follows, months if not years of pain, even some prescriptions are administered to correct the as yet unidentified mental condition, often without the patients consent even though they are of sound mind and appear as such, with no other evidence to the contrary except for the attempted removal of the 'ball'. I believe that if it was done to anyone else, it would outright, and blatantly qualify as torture, and an illegal prescription drug trial on an non-consenting patient, and the person who performed the operation would be tried, and quite possible convicted as such.


7. Finally to deny said treatment is analogous to denying treatment of cancer (with all due respect to those who actually have or had cancer), specifically in regards to removing the affected area. Using the arguments usually given, it could leave the patient disabled after the surgery, we should leave it (the cancer and the limb) there because there might be a cure eventually, even though there seems to have been and is little effort put forth to find said cure (although there a few who are investigating it), it'll be more harmful to the patient to remove the limb (and the cancer), and lastly you're just crazy (thinking you've cancer, even though you do).

To me those reason for denial doesn't really make that much sense (especially put in context to last reason stated above), let's deny present day treatment for something that can and has often led to be fatal, or does more harm to the limb in hopes that there will be a better and safer treatment in some odd indefinite amount of years.

Yes, I know there are those who are amputees or paraplegics who might find the desire to become an amputee appalling, but for those with biid, could it not be just as appalling that there are people who think this way, and ignore their underlying problem?

To those with biid, at least from the limited information I can gather, is that they're already using prosthesis for the affected limb, without the ability to give the affected limb the much needed break and relief of being able to remove the prosthetic limb.

So to those who are amputees and find this appalling. Before you make your judgment, would you mind trying to wear your prosthesis without taking it off for anything, for say a week, maybe a month, or even a whole year? Before passing your judgment on just how insane this is?


Yes, I know that there are arguments saying that it would be detrimental and a cost to society to allow such an operation. In both ways, of having to support said people after the operation both physically (in regards physical therapy and other things) and financially (paying for said treatment, and other things).

But society also has some obligations to the individual members who make up said society, I'm not going to go into detail about what those are.

However, most who want/need to have the limb removed, I would postulate, that they are more than willing to pay for said operation and treatment by themselves and pay even above what said treatment would normally cost.

In regards to physical therapy, I would believe that the time required for therapy would be minimal, as most have often independently 'adjusted' to said limb(s) already 'missing,' and 'adjusted' to living life like that just as independent they already are.

As for it being a way to get on a disability check, it appears for most that isn't even a thought, and those who have gotten the affected limb removed, are actually more productive at their, and a couple have even received promotions (based on anecdotal evidence).

Than, there are questions about disabling them by performing said amputations. But I propose another way of thinking. Perhaps it is actually enabling them, and not in the bad sense, but in the sense that can or actually do more. Instead of being preoccupied on getting the 'ball' removed, they can (and do) spend more time on other things that can actually benefit society.

To them/us, they/we are already disabled. But to have the amputation performed actually gives them an abled body (i.e. the thirty pound ball  is no longer present hindering their movements), no confusing signals received by the brain that it doesn't know where to place them or how to process them.


As for the argument that more might people might claim that they have biid if it gets officially recognized, and if amputation is the cure or treatment, may I ask is, if there are more people who want to commit suicide simply because they have heard of it, along with those same arguments against amputation as a viable and seemingly only cure/treatment, are there more people who want to be paralyzed, who want to be blind, deaf, want to have polio, who want to be depressed, who want to be schizophrenic, all because they simply hear of it? There may be a few, but I don't think it would be a significant number, especially to justify denial of what is simple operation to alleviate the severe mental and physical pain and anguish that comes along with this disorder. As for why I say it's a simple operation is as compared to the other options to treat this disorder, as a matter of fact, what other options are there? Other than suicide, and that is not always so simple.

Sure I will admit that more people will claim that they do, and it is probably because they actually do. The reason for this will probably be that those who actually suffer from it will feel more comfortable coming forward about it, and having an appropriate response, both from the general public and more specifically the medical industry, as opposed to today's usual response, which is quite laughable, you're insane, go take these drugs, there will be cure sometime down the road, it'll probably not be in your lifetime, but still they'll be a cure eventually so I won't treat you now to alleviate your anguish and pain that drive people to extreme measures to treating themselves or killing themselves trying, etc...

As a last word, I believe that in order to progress with the treatment of biid, both sides of the table (i.e. doctors and those with biid), must be willing to subject themselves to procedures with the possible outcome of what they hope or want not to happen. Whether it be having to perform the amputation to alleviate the pain (mental/physical) or to not having the feeling or desire to remove affected limb.

I for one am willing to try treatment with or without amputation to see if it would alleviate the pain/desire to have the limb removed. However my gut feels that the only way to truly deal with the problems is to remove that "thirty pound ball"



-David