Truth is, I would like to know more people with disabilities, but we’re ostracized from the community. We’re hated simply because we exist, even though we were not given a choice in having BIID. I’ve been wearing leg braces for almost two years and been a mostly full time wheelchair user for nine months. It’s getting kind of lonely. I have good friends, but no one that can really relate to what I’m going through besides the people here. Your situation is much more limiting than ours, but we face many of the same problems, accessibility, social issues, etc.

I have one friend with MS, but she lives far away and I don’t get a chance to talk with her very often. What I wouldn’t give to make her whole again. Many of us would trade places with you. I might on a day BIID is ripping me apart inside. Fortunately, that doesn’t happen very often right now.

My experience is that it is of substantial mutual psychological benefit for people with BIID and people with disabilities to be talking with each other at a rather personal level. Several of my friends with disabilities have noted how easy it is for them to talk with me about psychologically painful aspects of disability, and we have discussed why this might be. For starters, many able bodied people simply don’t want to hear about it. Probably it scares them silly to think about the idea of losing control over their bowels, for example. On the other hand people with BIID generally want to hear about all the realities, no matter how icky they might be. By contrast, I have been told that talking to other people with disabilities can sometimes fall flat: things along the lines of “So what! It’s just the same for me. Deal with it.” Not only do people with BIID tend to have a sympathetic ear, but they are also not likely to steal one’s thunder.

Finally, the particular nature of BIID is such that we have been thinking intensively about disability for all of our lives. Thus we are likely to have acquired some semblance of empathy and understanding, without the trappings of pity.

I think income is a factor for everyone, regardless of disability. I’m very lucky, my fiancee and I have been successful in our careers. It’s made dealing with BIID much easier, between my therapist, various medical tests, purchasing a wheelchair and a trip to california to visit with a group of researchers, it was an expensive year. I’ve actually looked into purchasing a hand-cycle, but they are between 4-5k for a decent one… not really in my budget.

I went through the vids, and one thing that I find not being mentioned (and I may have missed it as I was browsing quickly through), or I may have picked up from another message board entirely instead of from a video, is how to push a wheelchair. I think Chloe may have mentioned it already somewhere on here.

When pushing the motion you should be taking with your arms is a circular one. When your hands get to the ‘front’ of the wheels you should then release the rims and continue the motion on down and around and back up again to catch the rims and make your next push. This is less abusive on your arms and shoulders as you are continuing the same motion which is more natural; rather than stopping the motion, completely reversing and carrying your hands/arms backwards up over the wheels, then stopping again to grab the pushrims and move forward again.

I do intend to travel with my wheelchair, so I’ll probably have to deal with a lot of new terrain. What’s the point of going on vacation and being miserable because you left the chair behind? That link you posted Ellen looks like it has a LOT of good information, maybe I’ll try to learn some new techniques before I go. I think it’s funny they say that they use models who are “highly skilled”… hmmm, curious. How did they become so skilled I wonder?

@Roundshoes: Doing good, thanks for asking. BTW, I only drink socially and only drink the good stuff anymore. I don’t drink to get drunk, only to relax and only on special occasions, once, maybe twice a month. I realized many years ago that drinking was only making my problems harder to deal with by making me depressive. Glad you kicked the habit and like you, I think AA doesn’t work, it’s too dogmatic.

http://www.wheelchairskillsprogram.ca/eng/specific_skills.php

So was your tree jump tequila induced? I’ve had tequila nights that I don’t remember, but mornings where I woke up with a face next to mine saying, “Do you know what you did last night?”.

http://www.youtube.com/watch?v=p80u0rOUkcA

Maybe that will help a little? As far as any kind of manual to follow, I’ve been looking for one myself. OTOH, I’ve been doing this for years, and not having too much difficulty getting around.

Regarding the Taboo show, bear in mind that the film crew was out here for four full days. This was edited down to 15 minutes, or whatever it was. Consequently, at least 95% of what I said on camera was not seen in the show. It was clearly edited to make it seem more shocking than the impression you might have got had you seen the other 95+%. That’s okay; it’s the nature of television. But don’t take it to be an unbiased representation of what I or anybody else said or didn’t say.

To my recollection, one of the slight misdirections on the show was to imply that I had injured my leg while skiing, when in fact it was a spinal cord injury. Consequently I do indeed have bladder issues and catheterised myself for a while, since I have limited ability to know when my bladder is full and also have difficulty initiating urination. I’ve actually never had a UTI, but I can attribute part of that to my obsessive compulsive disorder. I make sure I do things rather precisely no matter what it is. After some experimentation and discussions with my physician, we came up with a different solution which she thought would minimise potential health impacts. I only go pee with fairly long time intervals; somewhere between 4 and 7 hours, depending on circumstance. My physician determined that my reflex urination is completely intact and there is little danger of things backing up into my kidneys. As long as my bladder is quite full I can deliberately start urination with a little pressure on my abdomen, though it usually takes 5 to 10 minutes. There is a possibility of the reflex urination starting without me knowing about it, and this happens not infrequently. I can’t tell when I’m peeing, and I don’t feel it on the left side of my genitalia or my left leg on account of sensory loss. However my right labia does have partial sensation and is enough for me to have fairly rapid awareness of peeing. What I can do is to shut off the valve very quickly once I’m aware of it. Therefore I am able to get away with incontinence protection without the need for catheterisation, although I have to admit that on occasion it’s not enough and my skirt gets a bit wet.

I have only shit myself once, at work, by accident since the SCI. It was before I was regularly using incontinence protection, so it was a bit unpleasant.

Another slight misdirection in the Taboo show is that I am pretending to be paraplegic. I am not. Those were the words of the commentator, not my words. In fact I have never once told anybody that I am paraplegic, nor do I behave as if I have complete paraplegia. What I am attempting to do is not simulate paraplegia, but to treat BIID. It’s not the same thing. The most extreme example of the difference between the two is skiing double black (expert) runs, such as I did yesterday. Due to the SCI I have monoparesis in the left leg, most notably in the quadriceps. This dramatically affects my ability to ski very steep terrain, and causes me to fall over quite a lot despite having improvised an asymmetric skiing technique. This helps my BIID a LOT because it forcibly reminds me that I do indeed have an actual SCI, albeit rather minor. Moreover, the strain on the weakened muscles causes the left leg to be minimally weight bearing for some time afterwards. I was not able to walk around without stumbling yesterday evening until I put on my leg braces. Again, this is extremely beneficial for my BIID.

As far as other paras commenting, I’ll mention that one of our regulars here is Kim, who is blind, quadriplegic and has cerebral palsy (yes I did tell her that she’s greedy!). She has been extremely supportive of me personally, people with BIID in general, and the Taboo episode. There are also a couple of other sites where paras have commented on the Taboo episode.

My chair was set up for a person of my height, weight and build, so I’m fairly comfortable with the setup. It seems to fit me very well. I just wish I had some professional guidance on things. I have noticed a bit of pain in my right elbow, but nothing serious, just soreness.

So, I’d see someone with a disability, or read something in a book either at home or at a library, and I’d wonder what it was like and if it seemed to resonate even a little bit in me I’d do something to try it out if I could. As I grew this ‘trend’ continued and I was able to expand my available resources for research as more options opened up to me. I’ve tried many kinds of things, but I’ve always come back to the focus being about my legs.

As to the question proposed regarding a UTI, like I mentioned before I’ve been using catheters regularly for the entire time I’ve been using a wheelchair and I’ve so far managed to keep any infections away. *knock on wood* Purposely causing a UTI is not something that strikes me as necessary and would be on the foolish side IMO. Even people with real SCI’s are supposed to do what ever they can to avoid them, and that’s how I view it. It’s a possibility, but something to be avoided if at all possible.

Induced a urinary tract infection? Well, I am a bit kinky, but I’d rather not go there. That sounds too painful, too dangerous to the bladder or kidneys. Women have more UTIs than men mainly because their urethra is shorter, bacteria have less distance to travel.

Trying to initiate a BM by stimulation before the urge would be pointless since the colon would be empty. Additionally, since the urge to defecate can be pretty strong, I’m much better off •NOT• to stimulate!

No weight issues for me, I’m 6′ and 155 pounds. And I do have some rotator cuff damage from attacking wheelchair ramps with a little too much vigor.

I didn’t mean to suggest you had BIID, but your statement, “it occupies my thoughts constantly” mirrors how much paraplegia consumes my thoughts.

@Ellen_BIID: If this house was wheelchair friendly, I’d be 24/7/365, too! My last house was no trouble at all except the bathroom door in the master suite. Did my laundry, cooking, and cleaning with no trouble from the wheelchair. Except for going to work, I was on the chair (with a cat on my lap- she’s a feline wheelchair devotee…).

My manifestation of BIID is paraplegia, and I will simply say that I was middle-age when I got there.

As for my wheelchair use, it has been 100% for multiple years and due to actions taken by myself I do not have the strength in my legs to even stand let alone walk. I live my BIID 24/7/365 and deal with everything that goes along with that including catheters, pressure relief, etc. I have tried to get my bowels on a regular manual program and used digital stimulation for that, but I was not successful and my bowels are still ‘normal’. As Mark said, a BM that requires manual assistance is one thing that we can’t really simulate and can’t experience, and I tried.

I’m pretty honest about why I use a wheelchair, so it’s not unusual to see me walking from time to time. My use of a wheelchair is not to simulate paraplegia, it’s to relieve the mental anguish caused by BIID. I don’t consider it a form of pretending. The less I use my legs, the better I feel. I treat BIID similar to a neurological disorder like MS, sometimes I need the chair, sometimes I don’t.

If I know I’ll be wheeling all day I use a Texas catheter- easier to use.

Digital stimulation isn’t necessary because BM is pretty much reflex- this is one of those things that we who are not physical paraplegics don’t experience.

I can understand your initial offense at us, this is such a strange phenomena, and to imagine us desiring paralysis when you yourself have such awful difficulties in your day to day life must be incomprehensible.

Occupying your thoughts constantly? It happens to us! …Maybe you have BIID! ;-)

When I was young and experiencing feelings or having thoughts that I did not understand I would ask questions or do research to try and figure them out. Of course that meant I was looking into and simulating numerous disabilities to see what they were about and would they answer me feelings/questions in some way. As I grew older, and my research continued, I slowly was able to refine my parameters to what they are today. Have I considered what it would be like to be an amputee at varying levels? Yes. Have I considered being deaf or blind? Sure, I’ll even admit that I think it would be cool to have a guide dog at my side since I really like dogs and would love to have one as a companion. Have I ever attempted any “simming” for any of these? to some extent yes. But it was all to try out a situation and find out if it was “me”.

So, it was not a ‘fascination’ per say, but a matter of trying different things out to determine if it fit right but still not discounting what I learned as useless. I have a better empathy for those situations because of my interest and subsequent research, and I still look at others who have those disabilities with interest and some understanding, but they were not right for “me” in the end.

No, we don’t know from first hand experience what it’s really like and we can’t. But we do our best to understand all of it, and some try to get as close as we can without crossing the line and attempting a potentially lethal self-inflicted injury.
I do want to point out though that the greater majority of the people who write actual articles, and a large portion of those of us who just submit comments, know the actual fullness of that iceberg we are staring at. Through our own research, talking to friends who are disabled (many of us know multiple people in various situations), working in jobs that deal with the disabled community directly, and even living our own lives to the closest extent that we can, we do see just how daunting and extensive it can be. Yet that burden of knowledge, great as it is, still does not deter us or cause us to “open our eyes” and leave this need behind us. BIID is a part of us, and we can’t just set it aside like an old worn-out wheelchair tire.

It sucks, it hurts both emotionally and physically. People who are permanently disabled via birth/accident/actions of others don’t want it and would get rid of it if they could. We want something that those people have, and we would trade it with them in a heart beat if we could and take their suffering from them just to bring our bodies into alignment with what our brains tell us should be the correct ‘form’.
Doctors have no idea what to do with us, and won’t even consider a surgical procedure at any level, from a temporary “test” to permanent alterations, because what we are asking for would break their concept of “a normal healthy anatomically correct body”. Yet with the very same hand that denies us surgeons daily alter bodies because someone was born with an extra finger/toe, has ambiguous/both genitalia, want their breasts/nose/butt augmented or reduced.

As for the public media figures mentioned to try and get more public attention drawn to BIID, well, just no.
Dr. Phil is no better than Jerry Springer or Jeraldo, IMO he’s an idiot and just in it for the sensationalism like the other two. Dr. Oz is only slightly better, but what I’ve seen and heard of him is rather discouraging. He’s come out with “professional opinions” that are just plain wrong on a number of occasions indicating that he and/or his staff failed to do any real research on the subject, or worse ignored what they found, again just for the ratings on his show IMO. Still not worth the anguish going there would probably create.
The National Geographic episode of Taboo was better, but that shows entire focus is to try and bring to light topics that are “socially unacceptable”. I grant that they attempt to do so in such a way as to not completely alienate the viewing audience and possibly make people think outside the box, but they still want the shock value and their reporting is slanted for that. Chloe has said that the segment featuring her was edited in such a way that things were twisted out of context at several occasions.

As far as Dr. Phil and Dr. Oz, actually I think I’d avoid them! So far, there are only four researchers that I’m aware of in BIID: Dr. Ramachandran (California), Dr. First (New York), Dr. Kim (Georgia), and Dr. Blom (Holland). Unfortunately, “awareness” involves going on a sensationalist TV show like Anderson Cooper or Jerry Springer- NO THANKS! Recently, one of the members here was on a National Geographic “Taboo” episode- with positive impact.

I think there have been some positive moves toward understanding, eventual cure or treatment, but we represent such a small segment of the population, so real progress will be slow. There are practically no psychotherapists aware enough of the phenomena to be of any help, meanwhile we have this blogsite and a couple of others for us to exchange our experiences and make note of commonalities between us. For now, we understand it better than the therapists.

No, we don’t think paraplegia will be romantic or fun; but understanding the realities as much as we are able seems to do nothing to diminish our BIID.

Thank you for your compassion towards us.

There is a reason I’m so outspoken about BIID. I desperately want someone to figure out whats wrong with us and how to correct it with some degree of success. Right now, I live much of my life in a wheelchair to mitigate the symptoms… trust me, there are many, many days I want to throw the chair in the trash… but I know if I do, in a few hours or days or weeks or months I’m going to be in hell again. I want people with BIID who find themselves in the situation I’m in to know they have options besides self injury, surgery or suicide. Using the wheelchair is a MUCH better option and it has given me a better perspective of what’s wrong with my brain. What I can say, from my own experience, is that BIID appears to be a sensory malfunction with some nasty psychological side effects.

And yes, I would very much like it if the medical community would help us find less permanent solutions. Whether that be temporary nerve blocks, cryoablation therapy, etc or simply making it acceptable for us to use wheelchairs and other assistive devices. Right now, even approaching a doctor is risky for us, we know they aren’t going to listen… and even if they do, that they have little to offer us.

Oh and you aren’t the only one who’s legs won’t allow them to sleep. Happens to me all the time and I know at least a few other people with BIID who have trouble sleeping because of it. If it’s not the odd sensations I experience keeping me awake, it’s the myoclonic jerks I experience. My legs often thrash about uncontrollably too. Whether this is related to BIID or I have RLS as well, no one can tell me. If it wasn’t for the medication I’m on, I wouldn’t be able to sleep at all.

Feel free to share more of your experiences with us. Most of us here are on TA.org are well educated people, but I’ve talked to a few dumb-asses with BIID who need to hear it.

@Roundshoes: I entered the orthotics (braces) and prosthetics (artificial limbs) field hoping that it would shock me out of BIID, but instead, just gave greater understanding of it. At our seminars I’ve seen very disgusting photos of very deep decubitus ulcers, osteomyelitis, videos on digital fecal extraction, and catheter insertion, hip dislocations from muscle laxity. I understand the point you’re making- paraplegia can be horrible and miserable. I wish all these factors would have stopped BIID urge, but they haven’t. I also remember the brother of one of my brother’s girlfriends who ran a tub of bath water that was too hot and almost boiled himself to death because he couldn’t feel the temperature. He could have died. No, paraplegia isn’t something to be romanticized, not at all.

I’m all for your proposal to have a spinal block for a couple of weeks. Although I (and a few others here) use wheelchairs to mitigate the BIID anxiety, the full experience of paraplegia isn’t available to us. I even proposed using spinal blocks as a diagnostic tool to determine if someone truly did have BIID- if the loss of sensation and mobility quelled the inner desire and brought peace with it, then yes- clearly this person has BIID. The only parallel that comes to my mind are the BIID amputees who have found peace within themselves after a voluntary amputation (yes, an irreversible decision on their part, but it worked nonetheless).

Your effort in shocking us out of BIID is noble and a worthwhile attempt, I thank you for it, but does not change us or our need. You aren’t the first to tell us these things. I wish the “shock value” would have an impact- but it just doesn’t.

Is it because a bilateral mid-thigh amputation vaguely resembles paraplegia; or because of an interest in disability in general? Probably a bit of both in this case.

I went through a period of confusion as a child, wondering if what I felt was specific to paraplegia or whether I could pick from a menu of disabilities. In my imagination I tried on many things to see how they fit, and also simulated many things. Ultimately it always came back to paraplegia again.

Are all people with BIID also very fascinated by the concept of disability in general? I don’t know. I have to admit that I am. I’m not sure I could explain why. I suspect it might actually be rather complex, with several factors playing into it.

What I don’t understand is that practically all of you BIID sufferers mention that you just want to alter your body to the body image that you have of yourself. But on the other hand you seem also very fascinated by the concept of disability in general. For example some of you like blindsimming although they don’t have blindness BIID.
Or like Chloe mentioned in one of her posts: “Actually everything from as simple as a band aid for a small cut, to the privilege of chatting with Stephen Hawking.”

Also, some studies have shown that there is actually a “gay gene,” predisposing children of certain families to be sexually variant. These are, though, fairly new studies, so they haven’t been corroborated yet. But back to your point, though, how do you know there exists no “transabled” gene?

I challenge that. Just like someone can teach themselves to be straight, I think someone can teach themselves to become normal once again.

Maybe the problem here is that wanting to become paraplegic and what not also comes with having to depend on other people when you get there, right? So you think you can only change if you get help.

Since there is no transable gene, you can change. You just have to try.

@Gravity and Mark: I have had a similar experience myself: I can clearly remember, on the first day of first grade, a boy walking in with his arm in a sling. I was happy because the teacher put him in the seat next to me. The teacher would ask him whether he was having any trouble writing, but it wasn’t the attention I wanted. I remember, when he walked in, feeling a sort of chill go down my spine. I knew it wasn’t the first time I had had thoughts of disabilities – I had been “pretending” with random household materials as long as I could remember – but it was the first time I was so close to someone, and the desire sort of began to crystallize.

I think over the years it changed, although my desires are still a bit cloudy. As it stands now, at the maximum I could have a right shoulder disability (but not amputation) and a right leg disability (not amputation, perhaps paresis.) Both together even sometimes feels like too much. The left side has to stay.

@Chloe: Oh well, it was too cheap to be true anyway!

“I’m pretty convinced that as I child I had fascinations and fantasies about people with disabilities as a consequence of my low self esteem, and bullying,…
And I think that with real BIID sufferers it’s the other way around: they can get low self esteem because they feel different, trapped in the wrong body,”

You brought up a point/idea that has been in the back of my head as a vague “something” and spelled it out in a way to give it definition and something I can sit back and think on. As an initial gut reaction, in my case it is the second part that feels correct for me.

I’m a fuckin’ mess, ain’t I?

If all of that wouldn’t have happened would I still have BIID? I think it would have been delayed, but not eliminated- I still wanted a disability. The BIID started when a saw the amputee at age 6, after kindergarten started, and my presumed sense of family stability ended. Despite that, I can’t help but to feel that there’s something more behind BIID than an emotional wound. Yes, you may have a good argument for the cause of BIID from what I wrote, but to see a leg amputee for the first time was soooooo much bigger than getting attention. Such a huge rush of emotions. I couldn’t open my mouth to say anything about it- the only way I can explain what I felt is “he is me”, and the “vampirism” increased with even greater ferocity. I identified fully with the missing leg, much more so than the cast on an arm. Damn!- “he is me” fit like a glove!

I don’t understand why or how, but in my early 40s the focus changed to both legs, and a short while afterward to paraplegia instead of amputation. Again, lower limb involvement and loss of use. You say you’re confused? So am I!

As it stands now, BIID has nothing to do with desiring attention. I could be paralyzed and locked up in a room by myself- perfectly happy. I don’t like being “helped” when I’m out rolling around in the chair, either. Holding a door for someone is just courtesy- believe it or not, I hold doors for “the walkies”.

To ask me about the BIID arising from esteem issues or esteem issues causing BIID is something I just can’t connect fully. Yes, I see a possibility, but it doesn’t really apply to my experience.

Let’s wait for Mark’s answer.

Just to propose a third option: Perhaps the low self-esteem from another source was expressed in the manner of wanting the other child’s cast, due to the inherent sensation that the body was wrong (an early expression of something not yet understood). The self-esteem and BIID interacting in that way. Both, not one or the other.

Just another possibility. Various permutations may exist in different people with BIID, I expect.

Let me ask you this question: Do you feel like if you didn’t had problems as a child with low self esteem, bullying,… that you wouldn’t have BIID now? Or that it is rather the other way around (namely that you suffered from low self esteem and bullying because you didn’t feel good in your skin because you felt you were trapped in the wrong body)

I think this is a good way to distinguish people like me from people with real BIID. I’m pretty convinced that as I child I had fascinations and fantasies about people with disabilities as a consequence of my low self esteem, and bullying,…
And I think that with real BIID sufferers it’s the other way around: they can get low self esteem because they feel different, trapped in the wrong body,… (off course they can also suffer from low self esteem for the same reasons as me but that doesn’t matter here to make my point clear)

For example, when I first told my friends about my braces, I showed up to a small party wearing one… they knew I was not injured as they had seen me just a few minutes prior. I told them, “it’s nice to finally meet you.” As in, I’ve known you for years, but this is the first time you are actually meeting the real me. That’s how it feels to me, the REAL me is the me that wears braces and uses a wheelchair. That was about a decade ago, when I was twenty-two. They didn’t really understand what I was trying to tell them, so I just let them think it was a fetish.

You might not want to take Dr. First’s earlier paper on BIID and the topic of sexuality too seriously, I’d concentrate on his more recent paper (it’s really quite good). At the time of that research, BIID was considered to be a sexual dysfunction by many in the academic community (due to the quantitatively poor research I mentioned before). Someone correct me if I am wrong, but my understanding is that at the time the majority of the people who were open about BIID were gay. This is possibly due to having the taboo of being homosexual already they were more likely to be willing to discuss the taboo of BIID. This could have skewed the results due to the demographics of the survey. It was also a widely held belief that this was primarily a disorder affecting men, but more and more women are coming out about it in recent years and those numbers might not be as lopsided as once thought either. As more and more people come forward to talk about this, the more accurate the research becomes.

My childhood has a lot of similarities with yours- bullied, “different”, low esteem, etc. My first exposure to any sort of handicap was in kindergarten where one of the kids had a cast on his left forearm. I didn’t see where anyone treated him any differently, but in the back of my mind I thought he should have been, and I wanted my arm broken so that I could have gotten the treatment that I thought he should have gotten. I see that now as an attention getting mechanism- I would have preferred coddling to bullying any day! I wanted that cast on my arm more than anything else.

When my brother-in-law’s brother lost his right leg in a printing press was the definitive moment for me. When I saw the leg of his Levi’s safety-pinned and doubled up due to his loss, the first thing I did when I got home was to do the same. I couldn’t duplicate the cast on the arm, but I could double up my leg and stuff it into my pants. I was six years old! There weren’t any rudimentary sexual associations with it, all I had was the feeling that this is how I should be- this is “right” for me- the way I’m supposed to be. I looked down at the “stump” in my pants, and wanted to live like this from this moment forward.

On the first day back at school after seeing my first amputee those thoughts stayed with me, and I realized that if I was a kid in class with one leg I’d be bullied and picked on even MORE! My social situation wouldn’t be better, in fact, much worse. It didn’t matter- somehow something was “set” inside my head that I shouldn’t have this leg.

@Xavier:
You mention that I should ask myself: when did this begin?
But I think it’s a bit more complicated than that. Let me explain:
In my last post I mentioned:
“I have always felt that these feelings came from simple Pavlovian conditioning (seeing someone with a handicap as a little child and more or less at the same time experiencing some primitive sexual feelings, for example through rubbing my body against a pole or something like that). I can remember several of such events in my childhood.”
And with “my childhood” I mean since I was approximately 7 years old. Yes, I experienced these primitive sexual feelings at such young an age. But that’s not the whole story I think.
When I was a small child, I remember having some problems with social interactions. I remember being a very shy kid (and perhaps one could say that I was also bullied a bit when I was very young). You could say that I was an overly sensitive child. But I also had a very rich fantasy and I’m quite sure that, as a kid I had fantasies about having a handicap (for example a casted leg, or an amputation, or being blind) to deal with the painful emotions of my low self esteem. (The psychology behind this was probably that I was thinking that if I had a disability everybody would be kind and friendly to me.) This combined with the Pavlovian conditioning that I mentioned above are I think the two main reasons that I have today these strange sexual feelings. Now, being a bit older I am conscious of the fact that it’s quite ‘sick’ to fantasise about being handicapped to raise self esteem. This consciousness has resulted in not having these fantasies anymore. Yet, on a sexual level these feelings and fantasies have stayed with me.
So why am I then so worried about all this?
Well, if you just look at the ‘symptoms’ or ‘behaviour’ when I was little, then it’s clear I think that this resembles quite well the behaviour of BIID sufferers when they were little:
1) it started approximately at the age of 7

2) I used to ‘pretend’ to have an amputation or a casted leg/arm when I was little in a quite similar way that BIID sufferers mention. (for example by sticking a leg in to my pyama’s or by putting my leg to sleep)

3) I have sexual feelings that look a lot like those of some BIID sufferers (i.e. finding people with disabilities arousing and sexually fantasing about myself having a disability)

4)And also, like many of you on this site, I’m suffering a bit from OCD and anxiety disorder and I’m also quite “nerdy” (like some of you also mention to be)

When I was fifteen (I’m now 18) I started reading some articles about BIID(for example of dr. First)
I suggest you read over again the 2004 article of dr. First. It will quickly become clear why someone like me finds this very confusing.
Do all the 52 subjects in this study really had BIID? I ask this because a certain proportion of subjects mentioned (according to the article) that sexual arousal was for them the primary motivation to have a leg amputated and another proportion mentioned that the attention it would bring was also a motivation for them.

So, should I be afraid that my feelings will evolve into BIID over time?
Or do I probably just have some strange wiring due to personality traits and circumstances?
Because, after reading the scientific articles (of dr. First for example) one could get the impression that people like me are also seen by dr. First as having BIID.

I agree with almost everything Mark said. The question to ask yourself is, when did this begin? If it started during puberty, then you probably just have different tastes in women than other people. Nothing wrong with finding people with disabilities attractive, they (we) need love and affection too.

If, on the other hand, you were trying to make leg braces out of broomsticks, pinning or binding your limbs when you were small child? Or you ever felt trapped in the wrong body or that you were not complete in some way? Is the primary focus of your feelings yourself and not other people? Do you see yourself as someone who is disabled? Do you feel that you want to wear braces, casts, prosthetic limbs or use a wheelchair? If you’ve ever worn any casts/braces, while wearing them, did they feel like a part of you? Have you ever wished that you were disabled? If so, then you might have BIID. You would probably know it if you did. I can’t remember not wanting to be disabled.

The reason the leading researchers aren’t able to make a clear distinction is that the research that has been done is lacking quantitatively and qualitatively. Until a few years ago and the widespread adoption of the internet, it wouldn’t have been possible to find us, most of us are pretty secretive. Most of the the papers that have been written involve only a few cases. Dr. First’s survey was ground breaking and was the first research done that had a reasonable sample size. The next few years should be interesting.

You might have gotten the wrong impression, we have nothing against fetishist/devotees, many of us go through that phase and “grow out” of it. I did, a long time ago, but realized I was not a devotee and it was about my own body. I simply have no preference on if my mate is able bodied or disabled. For a long time I let my friends think it was just a fetish, it was easier to explain that way, but I knew it was not.

Relax mate, you’re amongst friends.

As I became sexually aware and had my first erection, masturbation was also incorporated into those private times. The amputee pretending made me comfortable, and the feeling of comfort made the masturbation more enjoyable. BUT: amputee pretending did not necessarily mean that I’d masturbate- I’d often pretend without any sexual intent, but I did find that to reach full arousal the pretending was necessary. Perhaps it was the need to “be myself as I perceived myself” before I could feel good enough for sex. Maybe it was BIID saying, “HEY! I was here first” before the new feelings started getting my attention. In either case, I wasn’t “me” without the disability, and I had to be “me” before I could explore anything new.

As I expanded sexual experience to involve others, the pretending aspect died off, and found that sexual arousal didn’t depend on the disability factor. It would have been nice, but still, not necessary. I used to think that my issue was that of sexual fetish but I don’t think that’s the case. Since my body image has more or less gelled on paraplegia and it’s associated lack of genital sensation, the sexual connection has become even more removed from the equation. The whole “incorrect body” and “sexual stimulus” issues are completely separate for me.

I’ve come to the point where it’s more necessary to be the “me” that I mentioned earlier than anything else, beyond sex, cars, donuts, or career. Although I need and desire everything that’s required for a happy life on earth, there’s a very loud background hiss that says that I’m never going to be happy with functioning legs. To be blunt, I don’t care about sex any more- the need for paraplegia has replaced it as my main driving force in this life.

So you see: BIID can cause tremendous turmoil for the people who suffer from it, but it can also create immense turmoil for those who probably don’t have it, but who got lost in the huge complex stream of information about it. That’s why I so desperately want to try to understand you BIID sufferers.
I hope you understand this and are willing to help me in this process. Everything that could help in making a clear distinction between BIID and other disorders that look alike at first glance but are in fact different conditions is extremely welcome!

After reading a lot of articles on this site, I started also to understand BIID a bit better for which I am extremely greatful but I still don’t have the feeling that I “got the whole picture yet”. So, if permitted I will continue asking questions here that could contribute to a better distinction between true BIID and other disorders that seem alike but that are really nothing to worry about or can be adressed with therapy or medication.

If I ask some question then I never mean to offend someone, I just have to sometimes bring hypotheses forward that can lead to clear arguments from your side that can bring forward valuable information!

A may then be, this “strange disability fetishist” with whom the BIID community doesn’t like to be associated with, but in the end I’m just like you also a person who is looking for peace of mind and happiness. So if you can, please help me, and respond to my questions!
Thank you.

1) Neural pathways have been known to change, as per @Mark.
2) In 15 years of interacting with hundreds of people with BIID, it has not been my experience that “most admire the beauty of a stump” or “see amputees as heroes”.

As with all studies, one must examine the studied group and how they were recruited to the study. Different participant groups can significantly alter the outcome of any study.

http://www.ncbi.nlm.nih.gov/pubmed/19101876

Only the abstract is available on the site.
In this abstract their is stated:
1)”In several BIID sufferers the wish for amputation changed, e. g. from the left to the right leg. This finding is not in accordance with the brain-dysfunction-theory. These people rather have an ideal of a “perfect” body minus one arm or leg.”

2) “Most admire the beauty of a stump, and see amputees as “heroes” who still master their life in spite of their handicap.”

Could someone elucidate these statements to me? Because they SEEM to be incongruent with what I know now about BIID through reading on this site and some other sources.

Thank you!

B

Yes I have told friends with disabilities about my BIID. Contrary to your ableist assumption that people with disabilities are devoid of compassion, I find that such friends are notably empathetic towards my plight.

I must say, I really appreciate your empathy.

1) By well known, I mean that he has been active in several mailing lists, and notably Yahoo! groups.

2) I do not know him anywhere near enough to venture a “diagnosis” as what his reasons for amputations are. I will say that he does not display the typical BIID pattern. And he displays characteristics of other issues.

2)Do you think he actually has BIID (in the sense that he probably has a neurological disorder that could be compared to what to people on this have) and some additional “strange psychological features” or do you think his desire for amputation comes from something that cannot be compared to the desire for disability that people on this site have???

There is no help.

If specialist mental health professionals such as Dr. Michael First or Dr. Christopher Ryan, and dozens of other psychologists, psychiatrists, and assorted “psy” have not been able to help people with BIID, it indicates that there is no amount of “a lot of effort” (it’s ‘a lot’, btw, not ‘alot’) that will cure it. I have personally undergone nearly 20 years of psychotherapy of different kinds – classic psychotherapy, cognitive behavioural therapy, you name it, I’ve done it. To no avail. I have spoken with literally hundreds of people with BIID over the last 15 years, and they have had similar results – that is, no result from psychotherapy, self-help books, etc. Further, pharmacotherapy (medication) also are inneficient in treating BIID. Whether it is straight anti-depressants, SSRIs, drugs for bipolar disorder, meds for obsessive-compulsive disorders, anti-psychotics, none of these drugs help in treating BIID.

So I’ll ask you again – kindly explain, specifically, what help we should be getting?

You also haven’t answered the very good question of would you refuse transexuals access to surgery. I’d like to know your position on this topic.

Not all of us want to cut off limbs; some want spinal cord severance, deafness, or even minor nerve/muscle transections. But I fail to see how this makes us “not ourselves.”

Perhaps to you we seem insane, but you have never experienced the disorder. I would hasten to urge you, in the realm of politeness of course, to try to imagine the feeling we get when our body does not match our brain’s image.

As we have stated repeatedly, many of us have sought extensive psychological help. NONE OF IT HAS WORKED. On the contrary, those BIID sufferers who were able to achieve their desire have reported utter happiness and – most striking – a complete sense of relief.

Your metaphor with alcoholism is highly flawed, as has been pointed out. I refuse to indulge it.

None of this is meant to offend; I seek only to clear your confusion. Please understand that I in no way intend to insult you, but only to clarify our situation in your mind.

As you’ve already offered the benefit of your personal option, restating it does not move it any closer to the facts. The concept of saying something three times makes it true has never worked. I also suggest that you research the concept of ‘rhetoric’ before further posting.

yet i have been insulted constantly. treated as uncaring and called judgemental.

not one of you with BID is thinking right in the head. not a single one. if you were you wouldnt want to cut off a healthy limb. that is really an undisputable fact here.

its no wonder none of you have gotten proper help. i doubt any of you want it because the minute a doctor says you are depressed you go psycho on them and call them trolls. with that kind of attitude it is no wonder you have gotten no help. there is a time where the doctor must call you nuts. we have hit this point yet i feel he has not done so. and then go from there.

yet again for calling BID sufferes depressed ill be yelled at and insulted. sad really.

you BID sufferers could really help future generations but it seems all you want is a cut off limb rather than working on fixing the problem. it also seems none of you can grasp how apes*** this sounds and off the walls bonkers this BID really is. in the realm of diseases this one is probably the craziest ive heard of it and the only one that i cant seem to find a logical reason to it because a brain that uses reason and logic would conclude cutting off healthy limbs is NOT a good idea.

again ive stated facts. ill be insulted for it. the charade will continue. at the very least i feel like it tried to be the only one that tells you you are insane and need some serious mental help.

ya know i put it like this. if you ask a drunk if he has a drinking problem he will say no. the drunk will then proceed to drink 2 cases of beer a day BUT DAMNIT I AINT GOT NO DRINKIN PROBLEM. now 1 of two things will happen.

1. he will continue to be a drunk and ruin his life. while somehow others can have alcohol and not be affected by the problem.

2. he can somehow acknowledge there is a problem however upon doing so he must then go to AA meetings and he must put forth ALOT OF EFFORT to curing himself. you can attend AA all day but if you always go hope and get smashed then it matters not.

you people that insult me are in category two. some in category one. those in category two are the drunk that goes to the meetings and doesnt try and goes home and gets smashed. once you start going home and trying…well then we can have a rational conversation until then you cant tell a drunk alcohol is bad cause he wont listen. and those in category one cant understand how others can drink and be fine but why cant i???

sorry the truth offends you so. you are depressed unhappy and possibly suffering from a body image disorder. but giving into the disease isnt the correct answer it never is.

flame away i know the truth hurts.

I hope we shall hear no more from Adam. He has shown that he does not respond to rational debate, he doesn’t even appear to have read most of people’s replies to him. Anyone else reading this exchange will see that we – people with BIID and supporters – have put forward rational, evidence-based arguments and Adam has spewed vitriol.

Adam, please now leave. You have said your piece and you have been heard. Repeating yourself will not move anything forward. Leave us to our lives and our mutual support, and return to your own.

Thank you,
Gravity.

@B, please do continue to ask thoughtful questions – it is through communication that we find understanding. That you may have initially thought BIID was crazy is completely excusable, what matters is that you have looked into the issue and come to intelligent conclusions.
My thoughts on BIID vs. disability fetishism is that my (limited) understanding of fetishes is that they arise from early childhood when you see someone you admire doing/being something. Hence why people have fetishes that seem really weird – like bug squishing fetishes. So, maybe, if you admire someone greatly as a kid who is a wheelchair user, you grow up to find wheelchair users disproportionately sexually attractive. BIID doesn’t seem to arise from that, though may do in some very small part, but seems more to be a neurological thing.
I suppose there could be some sort of overlap, maybe disability fetishists find disability attractive so simulate it themselves so they feel attractive (wild guess) but that sort of “pretending” is not the same as BIID.
Hope that what I said made sense, remember it’s from the perspective of someone who has read about these things but neither has BIID nor is a disability fetishist.

I think your answer lies in the reverse of my statement- KAFOs, because of the leather and metal and restriction of gross movement, can be viewed as a sort of bondage device in a way. There are a lot of varied fetishes, such as being casted or blindfolded, that really aren’t BIID in or of itself, but may in some way be peripherally associated.

Also, “but im the better man i wont resort to just vulgar language and insults.”? I believe “well im glad we established what kind of person you. you and your fake disorder. your attitude proves you are insane. and like any insane person wont admit it.” constitutes an insult.

Like it or not, BIID is part of us. You don’t have to accept it for our lives to go on.

well im glad we established what kind of person you. you and your fake disorder. your attitude proves you are insane. and like any insane person wont admit it.

i was willing to accept this as a real problem but given your replies i now concede the problem is you are just insane. BID is fake.

it is brought about by the internet age. in any other era this wouldnt exist.

but im the better man i wont resort to just vulgar language and insults.

good day sir

telling a person \”FUCK YOU\” who only suggested disabling yourself is not the answer well that just proves what low life scum you people truely are.

i sincerely hope you get your disability and are forced to live alone in a dark room the rest of your life with no limbs.

furthermore cutting off limbs is really just simply insane here. i found a guy on another forum that sums it up perfectly.

”
The DSM is NOT the end all be all of psychological disorders. Women 90 years ago didn’t have orgasms, and were labeled “hysterics” by shrinks, and then doctors manipulated their clitoris and they calmed down. Any form of interest in the same sex was considered a disorder up until the 1980s (if I recall correctly) in the DSM IV. Being gay was a disease, now it’s not?

I don’t buy BIID. It sounds ridiculous. If it was 150 years ago and there were no cars, wheelchairs, and you’d spend your day (as a quad or para) in a hospital with bed sores and no one to talk to but other amputee victims, you’d reconsider.

But in this day and age of Me, Me, notice Me! I am all, ever so important and don’t want my limbs, you get to pay money, that could feed a family for ten years, to a surgeon to chop off your limbs. Wow. Just wow.”

this right here 150 years ago this wouldnt be an issue. nobody would want this. no sane person would. also there wasnt anesthesia yea spinal paralyzing surgery FTW there folks.

same with a drug addict they wont recover until they admit they have a problem and even then one must make efforts to do so.

tell me all of you tell me something. how exactly am i the insane one here? i mean i am advocating trying to find help. i am advocating dont give up or lose hope. i am advocating not cutting off limbs or becoming paralyzed.

how exactly am i the insane one?

you know what simply screw it then. cut off your arms and legs. live life limbless in a dark room somewhere clearly is better than being a healthy human being Oh Cursed God that gave me a healthy body You Vile creator you.

seriously the amount of jokes that can be thrown at you is absurd that one of your biggest problems is your arm hasnt been cut off??? seriously out right pathetic.

have i been insulting you this whole time? nope this is the first of it. but reason is apparently lost.

you know what? drug therapy wasnt always avaiable. neither was a lot of stuff.

sex change surgery is far far different from ya know chopping off a working arm. one is sexually confused another is crying over a healthy body. seriously you folks are crying over a HEALTHY BODY. God i’d trade any of your working spines for my beat up spine. yes i can still walk but abuse it enough for a year or two and your dreams of never walking again will come true.

i stand by it you people have given up hope.

what do you folks want? ive heard of people on other forums that want to put their legs on a railroad track. i mean are we just freakin insane here or what?

somehow keep trying. so no i will never endorse nor ever support cutting off healthy limbs as the solution. there is a solution to this but this aint it.

@xavier.

you are using a chair when you dont have too. you are pretending to be something you are not. you are living a shameless lie. how is this not at all wrong or unhealthy??? furthermore you are just feeding your fantasy of becoming paralyzed. again how in the hell is this not wrong or unhealthy.

granted i am glad you wish to find answers. you at least seem to have somewhat of a brain here.

and how would you know what balls i have or dont have??? you know nothing about me. i could of gone through things far worse than you can fathom or i could be lieing about that. dont presume to know you know what i have or havent suffered. however as i have said i am glad people are willing to speak out about this and i give you credit on that. but please do not act as if BID suffers have the biggest balls ever.

oh well the troll that doesnt want healthy limbs cut off has spoken so sorry to offend you.

AFTER that, of course, we can debate if it’s healthy to let people stay on drugs or not (and I’m not getting into it in this post) but the shocking gangrenous wounds (spent a day a while back googling just about every reference I could find on it, purely horrified) are mostly due to the side effects of DIY, poverty, and a reluctance to confront authorities (but mostly DIY – it’s the bad chemistry and contamination). Just as we can still debate whether it should be okay to get intentionally paralytic surgeries while at the same time (probably!) agreeing that taking an ax to one’s own back isn’t a recommended thing to do.

Back to the actual topic though. To take Xavier’s case (pardon for talking like that, I’m new but read you for a while!) he’s not looking for surgeries, he just wants to use a chair. If we assume the neurological origin hypotheses for a moment, that things organically feel better with the chair during the time he’s in the chair, and if (therefore) he was okay without having accommodations personally made (read: parking placards, the usual issue), so he parks in the normal spot, stands up, puts the chair together, and proceeds to wheel around all day in his normal life, how does that hurt anyone or take away anything from anyone? Maybe he’s crazy – but if so, why is that a problem?

Some things in the National Geographic video and some old old posts make me think that’s maybe not ALL there is to it, that for various reasons some might find it unbearable to be seen standing or whatever, that’s a topic for another post maybe, about identity issues. But even there, if someone can compromise those to just park at the back (if that’s a problem)… why the fuss? Even IF you want to say, well, they’re nuts? Why does it matter?

@B – as far as I know about SRS (talking to people who had it, plus more reading) the modern version is more akin to turning what’s there inside out and reconfiguring things rather than just lopping off bits. Anyway.

Your idea that you have as much right to make judgements on the treatment of BIID as those people who have devoted their lives to studying it saddens me, but if you must hold that opinion I can’t stop you.

What you’re doing is allowing your originally repulsion at the idea of becoming disabled to prevent you thinking any further. This is a failing on your part, and has nothing to do with people witb BIID.

Does it affect anyone else if someone’s healthy limbs are removed? If the problem is neurological (as the evidence suggests) it is far simpler and safer to alter the body to match the brain than to try and alter the brain.
No one is talking about chopping legs off children or people who can’t make their own decision. Once the person has had all the psychotherapy and pharmacotherapy available and still suffers all of this pain and anguish, why not solve that if it can be solved? Simply because the idea of it makes you queasy? That is NOT a good, rational reason to for making any decision.

The differences between BIID and drug addiction should be obvious. Not least, drug addiction can be treated. With rehab, drug replacement therapies, controlled withdrawal, etc. And those treatments can be very successful and return people to being fully functional. BIID cannot be successfully treated, except by aligning the body with self-image. You will allow treatment for one and not the other. Grand.
(Also, there ARE drug clinics that provide heroin addicts with morphine – in extreme cases where methodone has failed and the only way to keep addicts safe is to provide a clean, safe supply of morphine. This is highly controversial, but does happen.)

I don’t really want to hear any more from you, Adam. This is not because we disagree, but because you do not respond to rational discussion. Repeating yourself does not help your case. Suggesting that anyone who sympathises/understands/ins’t disgusted is also insane is just unoriginal. Do you think that anyone who disagrees with you is insane?

People with BIID know that their need to have a specific impairment is not normal, most have thought that they were insane at some point. Finding that this is actually a condition that is being studied is very helpful.
Do you think everyone with a psychological and/or neurological condition is insane? Are autistic people or depressed people insane?

You keep saying “never give up”.
You’re absolutely right. People should never give up persuing something that will make them happy. Even if it “saddens” people like you.

Ta,
Gravity.

No one can fix my brain and extreme surgery is not an option for me, I DO NOT want to be paralyzed. Nor would I risk experimental brain surgery. I understand what’s wrong with me and how to combat it. I need to use a wheelchair to function properly, sorry if you can’t understand. The perception I have of my body is wrong because part of my brain isn’t working properly and probably never has been, this started before I can even remember. My brain is screaming that my legs are wrong, wrong, wrong even though I know this not true. I don’t like it, this is not fun, this sucks.

Thinking we’re crazy is a big part of the problem for us. We grow up thinking we’re crazy, no one could understand. If we say things like, my legs are not a part of my body, we know people will think we’re crazy… but that’s how it feels to us! We hide, we lie, we hurt ourselves… all because we think if we talk about it, we’ll be locked up. Eventually, this drives us into a corner when we can’t take it anymore. I’ve almost committed suicide multiple times because of it. I’m not playing games. I’m here because I WANT the researchers to find answers, to help us. I’m here because I don’t want anyone to suffer. God damn it but I don’t want anyone else to go through this.

This isn’t a self esteem issue. I have way more balls than you do since you like to be judgmental, I can be so too. You have any idea the guts it takes to explain a disorder like BIID to a company full of people, your family, your in-laws, your friends? I make six digits, how about you? I’m responsible for my own work and the work of the people under me. And I do this all from a wheelchair. Piss off mate.

i want to ask you BID suffers and supporters of them to get their handicap applied to them something.

if a person has a drug addict and we will use the extreme case of this new drug in russia
http://www.youtube.com/watch?v=_Yfd_7jrnMk

if a person said they needed to keep using it would we support them? i sincerely hope no instead i hope we would try and help them out of it. the same thing here i desire to help you out of it.

sorry im not going to sugar coat the truth of you are insane if you want to have a limb cut off that is completely healthy. cause well you are insane.

also your husband supports it…i suggest he is insane too.

if a person is suffering from some kind of mental problem which is what this boils down to your brain isnt functioning correctly and making you feel like you have to be disabled which are functions of the brain. i support helping the person get past that with whatever that entails but the solution is NOT CUTTING OFF HEALTHY LIMBS.

nor is the solution to continue giving people in that video that drug. common sense can tell us this. logic can tell us this. reason can tell us this.

i seem to be confused with a troll because i do not support your desire to be amputated. if that makes me a troll well by gosh i am a freakin troll then.

@B
i too am curious about the sexual fetishism of it as i heard about that aspect and wouldnt be surprised if that is a factor on some level.

@Gravity
yes there self esteem is low because of BID exactly what i said. but so is drug user or any other sufferer of another problem but do we encourage them to keep on doing drugs? of course not. granted BID recovery and drug recovery are different i am sure or maybe they arent but the point is we dont encourage the bad behavior.

also i dont need a degree nor does it matter if i have one or not or if i am a 50 year virgin in moms basement. as to suggest cutting off healthy limbs as a solution to a problem is simply insane. i also dont need a degree to tell me a whole host of other things in this world. degrees mean little in the age of google except to help get a job and even then that is no guarantee.

the basic biology of functioning animals hell any animal can tell you cutting off perfectly healthy limbs is a bad bad idea. there is a reason is other animals kill handicap babies. there is a reason handicap babies used to be more likely to die before we developed technology and understanding of how to deal with it. the fact we can now deal with said handicaps is great but not an excuse to voluntarly do them.

i belittle no one. i am simply hoping and suggesting people do not give up and keep on trying. i do admit and agree not everyone makes it and some do give up but keep on trying.

do not be confused just because i called you insane does not mean i think any less of you. no i do not. but you are BID people are suffering from a serious mental problem of some sorts. your brain isnt working right. so yes you are insane but i do hope one day you are sane and figure out how to deal with this problem. perhaps you guys can be the ones that are the catalyst for future generations that suffer with BID by helping science and doctors now figure out treatments by constantly going to them for help now.

i guess i just see everyone here accepting it after all this time the only solution is to cut off a limb. NO IT IS NOT. likewise the solution is not to keep smoking crack. keep on trying. perhaps you never do become healthy but you know what? when you die you can say i kept on trying. i didnt give up. that right there is like with any problem the first step is to never give up.

and you are wrong this does affect me. it saddens me to think there are people like this and likely more and more with the era of the internet gathering like this that think the only way to find peace is to permanently injure themselves. this saddens me and i shudder to think we could live in a world where doctors would help people accomplish these goals of self mutiilation.

You seem to think you would be completely justified in being insulting here as this is “a rather odd topic”. There are lots of things out there that are odd, lots of things people do and feel that others could not possibly understand, but that does not make it acceptable to be rude and insulting. The right thing to do is attempt to understand – politely, respectfully and compassionately. If after that you cannot accept what you find, walk away, and leave people to their lives.

You belittle the impact that BIID has on people, by stating “people have problems” and “people battle their problems their whole lives”. This is very true, and applies very much to people with BIID too. They have to deal with it, and it is very difficult. Not everyone survives it. Would you be just as belittling to someone who was, for example, dealing with having a disability such as MS or paraplegia?

You say “the point is find a way to deal with it and move on”. That is exactly what people here are trying to do. They are talking with others who understand, some use wheelchairs, some see psychotherapists, some take antidepressants, some seek spiritual help. These things may help people here live their lives (in the same way that counselling can help someone cope with chronic pain), but it does not alleviate BIID or alter the neurological problem that leads to BIID (you wouldn’t deny someone with chronic pain medication on the grounds they should have counselling). You say that people here have not tried to get rid of BIID, if you read through older posts on the site you will find that is far from the truth.
The implication in your posts seems to be that using a wheelchair is an inappropriate method of dealing with BIID (I apologise if I am wrong). Why is that? Why is it acceptable to use a wheelchair to alleviate physical pain but not to alleviate psychological pain?

I don’t think you are in a position to say that surgery is not the solution to BIID. You are not an expert in the matter, you have not studied the subject at any length. I assume you are also not a neuropsychologist. Please allow the experts, scientists like Dr First and Dr Ramachandran, to come to the decision as to what is the best treatment. Currently, they accept that they have not yet got enough information to decide, but they have oberved that psychotherapy and pharmacotherapy are ineffective.

Saying “Get help” is completely unhelpful unless you can offer some actual constructive suggestions. People with BIID have TRIED every form of help they can think of. It is quite arrogant of you to assume that they had never thought of that before you came along!

You mention self-esteem. Has it occurred to you that people with BIID might have horribly low self-esteem as a consequence of the BIID? Of having to live their lives in a body that does not correspond to their brain?

There are a number of things you have said that you will find are simply not true if you read back through posts on this site, but my refuting them all in a list is going to become ridiculous. I do not have time – I took the time and care to read through and understand the things posted on this website, and I don’t see why I should itemise all my knowledge to save you doing the same.

I want to explain my perspective, the place from where I can view BIID. I think it is worth pointing out that there are people who do not have BIID who are involved in the BIID community and support the community. I am disabled, with various physical and mental health problems, and I am a biology undergraduate with a particular interest in health. I can study BIID from neurological, psychological and disability rights perspectives. (This combination of my interests is what led me to looking into BIID to the extent that I have.)

What’s this “we handicap you”? Who is ‘we’? Society? I don’t think that if Sean, or anyone else with BIID has surgery to align their body with their self-image it will have anything to do with you. Do you feel responsible for every surgery that takes place? That does seem to show a disproportionate sense of self.
It also displays a clear ‘us’ and ‘them’ mentality towards PWDs. This upsets me. Can we view PWDs as individuals please? Can we discard the idea of disability tragedy and disability hierarchy? Can we remember the people crippled by agoraphobia and also people like Oscar Pistorius, and that there is a chasm of people in between? Can we remember that some PWDs fit your idea of what a PWD looks like but some don’t? Can we just remember that the only thing that unifies PWDs is disability, and in every other, more significant aspect of their lives they are as diverse and interesting as everyone else?
Really, aside from my compassion and care for the people on this website, who have become my friends, aside from my understanding of BIID, your posts would upset me anyway because of your apparent feelings about disability in general.
It is not a tragedy, it is not the end, it is not the worst thing that can happen. When people stop seeing it like that PWDs will be more respected and people with BIID will be less reviled. PLEASE.

Yours,
Gravity.

@adam: You did read what I wrote in comment #19, right? I have had a huge amount of psychotherapy. I don’t make up this stuff. I also take prozac. What is this help you are suggesting we get?

You seem to assume that I don’t know what it’s like not to be able to toss and turn in my sleep. My physical disability does indeed deprive me of that ability some of the time. Are you also assuming that I know nothing of urinary incontinence? I have found out a fair amount about it first hand since my spinal cord injury. I’m not sure why you are pulling these assumptions out of thin air without anything to back them up…

I’ve been working from my wheelchair for the last two and a half years. Why are you saying that I don’t have a normal job? Okay, so I’m not a construction worker. Why is that more normal than what I do for a living?

My spouse is completely on board with my intent to be paraplegic. She encourages my authenticity just as I encourage hers. That’s what happens in a marriage between two mature people.

It’s not right to want to be disabled? I’m not sure what you mean here. Is it also not right to want to be president of the United States? Wanting to be president is clear evidence of a lack of self esteem; why else would anyone want people to vote for them? Perhaps wannabe presidents should be getting help instead of running for president. Are you implying that people with disabilities are in some way lesser or inferior beings? I beg to disagree.

My handicap is that I am not paraplegic. Consequently you are suggesting that I should stay handicapped instead of taking the cure. Interesting logic…

I wonder what the word insanity actually means. Perhaps it describes a person who has given up seeking their own authenticity.