Policy and mission
Frequently Asked Questions
Is BIID an Illness?
by Dr. Michael Gheen
One of my correspondents has asked some legitimate questions.
This is a project of what I intend to develop during the meeting in Frankfurt. But I will address those questions in a different order.
A) Why is the wish of losing a leg or becoming paralyzed an illness?
If we are to ask whether the wish to lose a limb or become paralyzed is an illness, we have to ask what an illness is. A first, naive, idea is that an illness is an "abnormality." So first we have to ask whether BIID is an abnormality. Now I spend a lot of my time doing statistical analysis, so this question has a rather specific meaning to me. Is BIID a sufficiently unusual state that it is beyond the usual "confidence interval" for human nature? We might ask, do fewer than 1 in 1,000 individuals have this condition? Pretty likely the answer to this question is "yes." (There have been no population based studies of BIID, so even this is not absolutely certain.) So by this standard, BIID is an "abnormality." Let's look at what exactly that means. The "norm" means the most common condition. BIID is well away from the norm of humans, so it is an "ab-normality."
But does this mean that it is an illness that requires treatment? To get at this issue, let me relate that a few years ago, the president of my University was a very tall man -- about 6' 8" tall. At the same time, the chair of my Department of Medicine was very short -- perhaps 5' 4" tall. Both of these individuals had "ab-normal" heights. But no-one would consider taking bone grafts from the legs of the president to put in the legs of my chair to make them both more "normal."
So the first stop on this wandering inquiry is that BIID is an "ab-normality," i.e., uncommon. But not everything that is "ab-normal" is an illness or needs to be treated.
Well, then what is an "ill-ness?" Or perhaps equivalently, what is a "dis-ease?" Presumably it is something that makes us feel ill or takes away our ease. Some time ago, I added to this idea that something that shortened life, like high blood pressure, could be considered an "illness" or a "disease" even if it caused no symptoms, because most of us want to live normal long lives. Someone (I apologize for not remembering who.) recently has added to these two that a condition that made it difficult for us to do things that we want to do and would be able to do if we didn't have the condition might also be a "disease." We have to be a bit careful here. Inability to sing well because we are tone deaf would not generally be called a disease. Being unable to play tennis well because we lack a leg _might_ be considered a disease, though many others would call it simply an "impairment." An "impairment" might lead to a "dis-ability," a lack of ability to do something that we want to or need to do, but as we all know an impairment does not lead with consistency to a disability, or to the same degree of disability in different people, because different people respond to, adjust to, or overcome the impairment to different degrees. But I find it hard to call something a "dis-ease" or an "ill-ness" if it doesn't result in one of these three things -- feeling unwell, shortening life, or impairing function.
What about BIID? Some people might well conclude that having BIID causes dis-ease. There is a lot of pain and unhappiness expressed about having BIID. But I would suggest that the pain and unhappiness is not from the BIID. It is from the response of the world to our BIID, or from our inability to get our amputations, paralysis, or whatever done. I actually enjoy my fantasies of being one-legged, and I enjoy my pretending. It is when these crash down in the face of reality that I become distressed. Well, irrespective, if BIID leads to unhappiness, doesn't this make it a disease? Not unless you want to say also that being black in a racist society or being gay in a homophobic society is a disease. The distinction here is important. If there is "dis-ease," then we should look for a treatment to change the condition that leads to the dis-ease. If the condition that leads to the dis-ease is intolerance or failure to understand, this is what we should work to change -- not the condition that is not tolerated or misunderstood. I would assert that lack of understanding or intolerance of BIID is a "disease of society," and that that is what we should be trying to treat and cure.
But surely, having a leg amputated (in response to BIID) would at least be an impairment? Well, yes. Missing a leg is undeniably an impairment. But in my experience having BIID and not being able to get an amputation is also an impairment. I can't begin to tell you all how much time I have spent (one might say "wasted") day dreaming about being an amputee, reading about amputation, pretending, and doing other things to assuage my BIID when I might be doing something more useful. There have been times when my BIID has distracted me enough that I have been delinquent in my academic job. So maybe I would like to minimize my impairment by having my amputation done. Medicine is absolutely full of these sorts of choices. Someone with bone cancer chooses to have a leg amputated rather than dying of his cancer. He chooses the lesser impairment. And when these issues arise, we doctors learn to listen to our patients to hear which impairment (s)he thinks impairs him/her less, and we design our treatment in accord with our patient's judgment.
So my second stop is my conviction that BIID is not a disease and, the corollary, not something that we should feel impelled to "cure." We should work to correct the misunderstanding and/or intolerance of those that want to change or cure the individual that has BIID. Getting an amputation (or whatever) done will lead to an impairment, but that impairment may well be less than having the BIID without being able to do anything about it. And working with the patient to minimize his/her impairment is what medicine is all about.
B) Is BIID a "psychiatric" disease?
There are at least two threads to this question. One is the question whether BIID is associated with other psychiatric diseases, or, similarly, whether the wish to have an amputation is "crazy" on its own. Another is the question whether BIID is a "mental" abnormality or one with neurological roots. Let me address these issues separately.
There is now very solid evidence that there is a group of patients that seek a major amputation, or paralysis or something similar, in whom no other psychiatric condition or abnormality can be found. Specifically, folks with BIID do NOT have a psychosis -- actually by definition, as a psychiatrist would not apply the label BIID to a psychotic person. Now here I have to explain to those that may not understand about psychosis that just to want to have an amputation -- no matter how "crazy" that may seem to others -- does not make a person psychotic. There are clear criteria for a diagnosis of psychosis, basically reflecting that the psychotic individual has a radically wrong understanding of the reality around him/her. There is really not much psychiatric debate about the assertion that patients with BIID are not psychotic.
But is the desire to have an amputation so bizarre as to warrant considering this desire to be "crazy?" This generally is considered in terms of whether the individual with BIID has impaired ability to make decisions about his/her treatment. I don't have the time to go into all of this again, but I have argued elsewhere that while our desire for an amputation is clearly "ab-normal," it is no more either rational or irrational than many of the other deep preferences that we have that make up our personality. Indeed, most of these preferences are simply "a-rational," not "rational" or "ir-rational." The word "ir-rational" might be interpreted to mean something that was internally inconsistent, or at odds with other deeply held desires and preferences. So while our desire to have an amputation might well seem bizarre to others, it is not at its root any more reasonable or unreasonable than all of the other preferences that make up our personality. To get to the issue of ability to make decisions for ourselves, I can find no logically consistent basis for questioning our ability to make a decision about amputation any more than for questioning our ability to choose to listen to classical music rather than to country/western music. I can find no basis for finding a decision to have an amputation any "crazier" than a decision to play tennis rather than baseball -- other than that others find it bizarre, and that it is a much less common decision for someone to make.
So, my third stop is to say that a desire to have an amputation is only "crazy" if we mean by this that it is "ab-normal," i.e., uncommon. It is uncommon. But there is nothing about it that implies any impairment of our ability to make an informed decision for ourselves.
The second half of this "psychiatric illness" issue is the question whether BIID is due to a mental condition or a neurological condition. I find this question itself truly bizarre. For unless one wants to hold some philosophically difficult position about a completely separate existence of the mind and the body, there must be neurological correlates to ALL of our mental states. How else would our decisions get transformed into actions? Movements of the arm or eye, or whatever? There has been a lot of recent interest in the findings of the Ramachandran group that one can detect specific functional neurological anomalies in brain function of BIID patients, not seen in "normal" controls. These are, indeed, fascinating studies. But what is surprising about them is not that there are neurological correlates to the "mental" state of BIID. Indeed, it would be truly astonishing if there were NOT any neurological correlates to any "mental" state. What is interesting about the findings of the Ramachandran group is that we may be beginning to understand something about how BIID emerges, and this is, indeed, fascinating. But I would suggest that the only real difference between a purely "psychiatric" condition and a "psychoneurlogical" condition is that in case of the latter we understand what some of the neurological correlates are, whereas in the case of the former we remain ignorant of the neurological correlates. When we learn more about neuropsychology, our nature will not be any different from what it was before. We will just understand ourselves better.
Recently it has been suggested that this issue whether BIID is a purely "mental" or a "neurological" condition has importance for the question of "impaired autonomy." That is, it has been argued that if BIID is a neurological, rather than a purely mental, condition, the BIID "sufferer" may be "trapped" by his/her neurological condition and not be able to make a decision about his/her care that is completely "free" of compulsion. To my mind this suggestion is absolutely absurd. If we make the assumption that wherever there is a neurological correlate to our mental states we are not "free," why, then nothing that we think or do is "free." I don't want to get into the question of free will. Actually nothing about the above really has anything to do with this question. But if we are going to treat someone as free to make a decision when we don't understand any of the neurological basis for his/her decision, then why should we change our approach when we do understand some of the neurology? In my discussion above, you have seen me look at the structure of words to see what they mean, as in "dis-ease," "ill-ness," "ab-normal," "ir-rational," and so on. So I invite the reader to consider the meaning of "auto-nomy." In this word, the "auto" refers to the person's own self. "Autonomy" is freedom from outside compulsion, not freedom from oneself -- and certainly not "freedom from one's brain." It would make sense to ask about "impaired decisionality," which is a word that we use for patients that are too young, too feeble minded, too senile, or too psychotic to make sensible decisions about their own care. But no-one has suggested that the adult patient with BIID is too young, too feeble minded, or too senile. And we have dealt above with the issue of psychosis. So I can find no logical basis for questioning the ability of the BIID patient to make a decision about his/her own body.
So my fourth stopping point is to say that it makes absolutely no difference whether one considers BIID to be "psychiatric" or "neurological" or "neuropsychiatric." And I have argued above that, in any case, it is not a "dis-ease" or "ill-ness."
C) Why is it in the opinion of less people her not possible to get surgery in Germany without bringing "BIID" to the ICD-Catalogue?
Now let's be careful about the answer. Alexander asks specifically about getting surgery in Germany. I know almost nothing about the legal, medical, or ethical situation in Germany. It would indeed be presumptuous of me to try to answer Alexander's question with reference to Germany. So I am going instead to give my opinions about whether it will be important for BIID to be listed in the DSM for a person to get surgical -- or for that matter any -- treatment for it in the US. What is the DSM? It helps to spell out the name rather than just to use the initials. It is the Diagnostic and Statistical Manual of Mental Disorders, which is published by the American Psychiatric Association. So the straight forward way of answering above questions is to ask whether BIID is a Mental Disorder. I suspect that any of you that have read this far in my disquisition will guess that I will say that BIID is a Mental Ab-normality, but not a Mental Dis-order. (The latter term has the strong implication that there is some ill-ness here.) So in a pure world, it should not be appropriate, let alone necessary, to list BIID in the DSM -- any more than it is considered appropriate to list homosexuality in the DSM.
But in the US, a physician or surgeon has to list a diagnosis for any treatment that (s)he prescribes for or administers to a patient in order to be able to be paid for the treatment. Now the gay patient has no limitations to his/her ability to enjoy the gay life style without help from the health care system. But not so the patient with GID or BIID. We need surgeons willing to do surgery, and they need to get paid. So while GID and BIID may not be "dis-orders" in the strict sense of the word, at least in the US it would be awfully convenient for there to be a recognized "diagnosis." And for "mental disorders" the Bible is the DSM. So I would argue that, while ideally one should not have to be designated as having a "disorder" in order to receive treatment, it will probably be important for individuals in the US for there to be a citable "diagnosis" in the DSM in order for them to receive surgical treatment. I am enough of a pragmatist that I am willing to have my condition listed in the DSM in order to be able to receive treatment and have it paid for by my insurance.
Dr. Michael Gheen
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