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Bravo good sir. I completely agree. I’m on my first chair, and I paid for it on my own. While any help is appreciated in covering DMEs and things of that nature, I have no issues paying for the things on my own, so long as I was actually able to get what I wanted, surgery being at the top of the list.

I agree with Seth. I have no problems with paying for what I need, large and small, frequent and infrequent. surgery, wheelchairs, catheters etc. But really I think that my willingness to pay comes mostly from a sense of desperation. I’d pay if it’d mean I’d get what I need.

I don’t think we should pay though. Those of us who live in countries where we recieve health care funded by the government recieve what we need for every other ailment so why not certain treatments for this one? They’ll give us counselling and psychotherapy but not surgery? They’ll pay for ongoing appointments with a counsellor at £50 or more a session but not ongoing medical supplies at pennies per day? A wheelchair that lasts 5 years costs the equivelent of 6 months psychotherapy (or roughly similar)

I agree with Sean that it makes no economical sense to keep paying for psychological treatment but question whether or not to pay for physical treatment.

That said, if the option was there to get what I need if I pay then I’d pay.

If we wanted to keep going down this path of argument one might say our own taxes would be essentially paying for whatever financial assistance our governments provide. Whether it be psychology or surgery

Well, Sean, you said it would be controversial! :-)

As I only just found out about the existence of BID, I am guessing that my opinion here is going to be irritating and ignorant, but you asked me my opinion on the post, so here it is: your model of BID being a mental health condition leads me to believe that paying for surgery is a very odd choice.

I have struggled with mental illness myself, and what we did was try to cure me of depression. A dear friend of mine was having breaks from reality, and what she and her psychologist and psychiatrist did was try to help her through EMDR, therapy, and medication to stop believing in her psychosis, not to alter her physical reality to match her delusions.

(I am not calling BID a psychosis or delusional; I am talking about my friend, here.)

The same goes for anorexia, which seems much more applicable to my very new understanding of BID (although I realize paralysis or a missing limb won’t KILL you like anorexia can): instead of altering a woman’s physical nature to fit what she thinks she should look like in her mind (which might be possible with surgery; I don’t know), treatment involves trying to help her change her mind to match her physical reality.

So, I guess, what I’m saying is: given the mental illness model, how is it that surgery is the answer?

That said, I wish we had an entirely different model for medical equipment completely: a consumer model. No prescriptions, no chairs designed for insurance companies instead of people. I wish I could go out and buy a decent chair myself, like I bought my bicycle. I’d have a few: one for indoors, one for outdoor, and maybe a very lightweight foldable one for travel.

If we lived in a society where you used a chair because it helped you get around (for WHATEVER reason), much of these arguments would be moot, don’t you think?

I also think if surgery and medical care weren’t so insanely expensive none of this stuff would matter much, either, as far as who pays for what.

I myself see no problem in society (through private or governmental care) paying for what is required treatment for a disability. I am not one of those people who think that certain conditions “deserve” insurance coverage and others don’t. I am just trying to understand the assumption here that surgery is what is needed.

Thanks for being so welcoming and kind!

@Haddayr Thanks for jumping in :)

The main reason I use the “mental illness model” is because I don’t think that we have a chance to be taken really seriously by the medical community at large until BIID is “officially” codified. At the moment the condition, while real, exists only in some, few and far between, academic papers. I don’t mind the mental illness label, if it is going to get me the treatment I need! But I am far from sure it is purely a psychological condition, especially with research out of San Diego showing definite neurological differences in the brain of people who have BIID.

I understand your point though – usualy, you treat a mental illness to make it go away. And that’s fine. But, to date, neither pharmacotherapy nor psychotherapy have shown to work. People who have BIID are not dellusional. That’s not me saying it, but a BUNCH of doctors and psychiatrists :) There is also a big difference between Body Dysmorphic Disorders, such as anorexia, and BIID. People with BDD have an eroneous perception of their body. They think their body is not normal and want to make it normal. We *know* our bodies are normal, and seek to align it to our self-image, which would render our bodies abnormal.

Currently, Gender Identity Disorder is classified as a psychological condition under the DSM IV (the “bible” of psych conditions). I am not saying that GID is a mental illness. Just saying it’s there. Surgery is part of the treatment available.

It is possible that in 25 or 50 years a solution less invasive than surgery will be found for BIID, and that would be great. But it will be too late for me and hundreds of other people. Don’t force us to suffer because of your prejudice against disabilities (when I say “you”, I mean society, not Haddayr)

FWIW, you *can* if you have the funds, purchase your own wheelchairs without prescriptions, etc. Email me if you want details.

If we lived in a society where you used a chair because it helped you get around, some of these arguments would be moot, yes. Still, for us, it’s not just about using a wheelchair. If it were, I’d be happy. I’ve been using a wheelchair for a long time now. But just using a chair isn’t enough. It’s not about the wheelchair, it really is about the paralysis.

Thanks for being willing to “play” ;)

I can see the logic in your argument, but I think the part you are obscuring is the transition from a mental disability to a physical one.

Treating a mental disorder with, in this case, amputation is a pretty radical solution. It’s a very “caveman” solution for a mental illness and as such, we should look at it as a “treatment” prescribed and selected by the patient – and one not approved by medical community. Correct me if I’m wrong, but the only reason the occasional doctor does support amputation is because the patient will do it on his own, and it’ll be safer this way.

In a sense, BIID sufferers are getting this amputation by making threats of self-harm. They are then choosing to make themselves an invalid, and want the taxpayers to foot the bill for their new life as an invalid.

@Michael, actually you *are* wrong. The only surgeries that happened for BIID were not the result of self-harm, but the result of no other way of “resolving” BIID. The individuals who received amputations had been evaluated by two different psychiatrists before the amputation proceeded. Psychotherapy and pharmacotherapy do not work.

It has NOTHING to do with wanting to be an “invalid”. In fact, everyone I know with BIID are accutely independent and wish to remain so post injury. It is not about going on public benefits.

Further, there is evidence showing that BIID actually has a neurological aspect to it. This means it is as “physical” as any of the dozens of neurological conditions listed here: http://www.disabled-world.com/artman/publish/neurological-disorders-list.shtml

@Haddayr how did EMDR therapy work out for your friend? My psycs wanna try it on me

Just want to point out that it is erroneous to draw a distinction between the mental illness of psychosis and biology. The reason psychosis responds to medication is because it is fundamentally physical in nature. There is a psychological component, sure. But it is not the basis of the condition. I think BIID will be found to be similar ie. a physical illness/disorder, with psychological manifestations.

Sean, I think you’re throwing “wrong” around too quickly. I’m only familiar with the three “above ground” amputations Dr. Robert Smith performed in Scotland before he was stopped for ethical violations.

As you surely know, the Internet is maggoty with BIID tales from people who used dry ice to harm an unwanted limb to the point where surgeons had to cut it off. This is what I was referring to when you said, “The only surgeries that happened for BIID were not the result of self-harm”

And yes, a neurological disorder is distinguished from a mental illness because of a physical cause – but I was under the impression that BIID has only been studied by a handful of researchers and I would enjoy reading the study you referenced that concluded it is neurological.

In your last paragraph, you seem to try to obscure what I meant for mental versus physical. Mental care is handled differently than physical care. You might say they are two different categories. Yes, some mental problems have a physical origin, but the manifestation is the key – and the manifestation of BIID is mental.

@Michael, the study is called: “Apotemnophilia: A neurological disorder” and can be found here: http://www.neuroreport.com/pt/re/neuroreport/abstract.00001756-200808270-00011.htm

the study referenced above seems specific to individuals with BIID who want an amputation. am I wrong in my understanding that BIID extends beyond amputations? additionally, is the presence of abnormal or increased nerve sensitivity on the affected limb a condition for diagnosis of BIID? if not, do we still generalize the “neurological condition” label to those who feel they have BIID but do not experience the neurological aspects outlined in the cited study? I am trying really hard to wrap my head around this, but I feel like I keep running into incongruent logic…

Hi @dykotomee,

Thank you for your questions.

the study referenced above seems specific to individuals with BIID who want an amputation. am I wrong in my understanding that BIID extends beyond amputations?

You are correct, BIID expresses itself by needing different impairments. Amputations and paralysis are the most common ones (that we know of at the moment). The other common needs are blindness or deafness.

Academic publications on BIID have focused almost entirely on the need for amputations, probably for historical reasons. The first person to publish about it was Dr. John Money, who was working in concert with Gregg Furth. Gregg himself had BIID and needed an amputation. It’s seems that resulted in initial research ignoring other “expressions” of BIID. This is changing though, as more often authors acknowledge other requirements. Also, Dr. Michael First has now completed the data collection phase of a study focusing on non-amputee BIID. When the analysis is finalised and the paper is published, that should “officialy” clarify a lot.

additionally, is the presence of abnormal or increased nerve sensitivity on the affected limb a condition for diagnosis of BIID?

No, the presence of abnormal nerve sensitivity is not a condition for diagnosis. Partly because there is no diagnosis criteria set at this point. Partly because much more research is required.

if not, do we still generalize the “neurological condition” label to those who feel they have BIID but do not experience the neurological aspects outlined in the cited study?

We can’t say “definitely” that BIID is a neurological condition. But that study does show that BIID is also not purely psychological. Most likely we’ll figure out in the future that it is neuropsycholigical – a mix of both.

That study is really good. But it is also incomplete. They did these tests only on a few individuals, all requiring amputations. Had the study been done on a larger subject pool, requiring amputations, or paralysis, or deafness, or blindness, we would have a better understanding of the extent of neurological impairment.

Keep in mind that BIID has not yet been codified in any medical books. It doesn’t make it any less real, but there are no real definite answer.

I am trying really hard to wrap my head around this, but I feel like I keep running into incongruent logic…

I appreciate your trying to get your head wrapped around it. It is definitely a topic that is somewhat difficult to “get” if you don’t live with BIID.

At this point, the best understanding of BIID would say that the criteria fall along these lines:
* The presence for a need for a physical impairment
* Usualy the early onset (pre-puberty) of the need for said impairment.
* The absence of delusion/psychosis

I hope this helps.