I've had this blog for some time now but I've never been able to bring myself to discuss anything in it. To discuss something here would be like admitting there was a problem, facing up to it and maybe having to do something about it and I never wanted to do that until very recently.
The reason I was scared - and that is the right word - to admit there was a problem is because when I looked for help identifying what was wrong with me I found the world at large saying I was insane. The world tells me I have some kind of mental fault, in some places there were people telling me I was sick, that I couldn't possibly be a normal person and feel as I do. Others thought I was degrading those people with "real disabilities" simply by virtue of existing with the condition I have. But I'm not sick and I'm not degrading anyone. My condition makes me no worse than anyone else and the simple matter of my existence changes nothing for anyone either.
So hi, I'm April and I have Body Identity Integrity Disorder (which I will from now on refer to as BIID for the sake of less typing). For those of you who don't already know what this is, let me explain from the point of view of my own experiences.
BIID is a potentially debilitating condition caused by a difference between the perceived and actual self, that is the brain tells you your body looks like one thing but in reality it looks like another. In some people their perceived self has two eyes, two arms and one leg but their body really has two eyes, two arms and two legs. The difference causes a lot of anxiety and related problems for the person concerned, because the brain can't reconcile the difference.
For me, BIID manifests in a problem with my optic nerves. My perceived self has highly damaged optic nerves, which would make me blind. However, my actual situation is one whereby I can see rather well, aside from headaches and eyestrain; which are ironically caused by pressure-damaged optic nerves due to inflamed sinuses. I am therefore confronted every second of the day with an unreconcilable incongruity between what my brain tells me I should be like and what my body is actually like.
The majority of people I know cannot fathom what my problem is and I'm sure there are many blind people who would be similarly confused. I have been asked "why would you want to be blind?", "shouldn't you be happy that you're not blind?" and questions like that. In actual fact yes, I should be happy that I'm not blind, I'm physically able to do a lot of things that blind people cannot do and that's great, really it is.
I should be extatic, as should every sighted person, that I can see all the wonders the Earth has to offer but the sad fact is that I can't enjoy those things because my brain is constantly telling me that the signals it is receiving from my eyes are wrong. At best I should see a murky, clouded blur of colours, maybe even nothing at all, and I cannot escape this.
Similarly, I do not 'want to be blind' in so many words. It's not a case of want, it goes beyond that. In order to resolve the self-conflict to which I am subjected I have to be able to change one of two things. Either I can change my mind to make it accept my actual existence as 'right' or I can change my body to match my self perception. I cannot change my mind though, the technology does not exist and is unlikely to exist at any point in my lifetime. I am therefore left with one option: to end the ever-present, gut-wrenching sickness caused by this condition, I need to become blind.
But people tell me this is sick, that I would be harming myself and that I am making fun of the problems blind people face. None of this is true. I am not sick, I am simply trying to make the best of my situation. I have a problem that has only one viable solution. What would you do in my place?
Yes there is an element of harm in this but the minor amount of physical harm required is tiny compared to the amount of mental damage this condition is causing and will continue to cause for the rest of my life if I do not do something to change it. For those who say I am harming myself if I do what I need to do I ask you this: does it harm you if I do this? No, it does not. However, it harms me more if I don't do it, so leave me to make my own choices about what I do with my body.
Then there are those who say I'm making a mockery of blind people, somehow undermining them by apparently 'wanting' to be blind (and I'll remind you about the above, where I explained that it's not a case of 'wanting' anything). There is no nice answer to this, the whole statement reeks of prejudice. The idea of wanting something being demeaning to those who have it suggests having it somehow lessens a person. Do you think anyone with a disability is a lesser human? I don't. So take a good look at yourself before you start making remarks like that to me.
So there you have it. I have BIID and I have a plan that would eliminate my problem. It's a very simple plan and it stems from the advice parents give to their children when they're young: don't look at the Sun or you'll go blind. It's true, the Sun can damage the retina. All I need to do is either look at the Sun for long enough (or even better, look at it through binoculars so I don't need to endure the pain for quite as long) and I'll eliminate the conflict between my percieved and actual self. It could all be over with in just a couple of minutes and I'd be able to get on with my life without this millstone weighing me down.
So why don't I do it?
Unfortunately my girlfriend is one of those people who doesn't understand my condition. I've tried to discuss it with her but I'm always met with a lack of understanding and endless pleas of "don't hurt yourself". I get the feeling that if I went through with my plan, she would never accept it and I'd loose her.
I don't want to loose her so I don't do what I need to if I'm ever going to be rid of this problem but, as the subtitle of this journal says, it's sometimes so hard not to look at the Sun.
16 comments:
I understand about not changing yourself because your girlfriend doesn't want you to change. :( I can imagine it's very hard for you.
When you experience temporary loss of vision (eg from being briefly dazzled by a bright light) does that feel right? Sorry if this question is ignorant, I don't know much about BIID.
All I can say is that you're not alone in this. BIID takes many forms, and is only beginning to be noticed. In the meantime, those of us who suffer from it can find some comfort in knowing that there are others out there, and network out to communicate with each other.
Eventually the medical and scientific communities may catch up and realise that there is a real issue here that needs to be addressed, rather than just passing us off to the psychs.
Being trans myself, I can understand the need for changing ones' physical form to match who they are inside, and the pain that being wrong can bring.
To me, I was merely changing my body, but in a way that does not incapacitate me. I'm still as fully functional as a member of society as I was before. I realize some would look upon what I've done, and say that I've caused myself harm as surely as someone intentionally blinding themselves would have, but I don't agree. For me, the only definite loss was the loss of the ability to procreate, which is fairly minor in the scheme of things.
It's harder to understand why someone would want to actually change their body in a way that hindered them. I have trouble understanding why my boyfriend would go through all the expensive surgeries he needs to have only a fraction of the results I do, and yet he's still not really doing anything that'll result in loss of ability to function - again, just loss of ability to procreate.
Something else wrong? Should have pointy ears, tail, fur, a button nose, what have you, doesn't really bother me.
But actually giving up someone significant... I find that hard to understand why someone would, even though I share the pain of a body that doesn't match what it should be.
I'm not going to say you're crazy, stupid or anything like that - because I don't agree with that conclusion - but I do find it hard to understand.
That said, part of me can actually imagine living the world blind, relying on your other senses - in order to open my eyes to what is around me, sometimes I must close them - although our world is a sighted world. Part of me can imagine living my life without hearing - although I would miss music. If I had to give one up, I think I'd choose it to be sight over sound, because sound anchors me to the world - sight is just pretty pictures that have nothing to do with me, except that I need to see those pictures to get around.
Glad to read about your story, April. Keep posting! Let's let people know that we are out there and are just normal people.
"When you experience temporary loss of vision (eg from being briefly dazzled by a bright light) does that feel right? Sorry if this question is ignorant, I don't know much about BIID."
I'm not sure about brief dazzling by bright lights (that tends to be disorienting more than anything else) but I do have a sleep mask that I can use to block out vision for a while and that feels 'right', although it's only a temporary reprieve. I'll write an article on that at some point.
Thank you for starting your blog. I'm glad more and more people are blogging about BIID, as it is important to give a human face to this condition.
You say you aren't sick. I disagree with that assessment in some way. I have BIID and I think I am sick. I am sick in that I have an "abnormal" condition, which I think is a mental illness. That makes me sick.
But we aren't sick in the sense of "sicko", "perverted" or "weirdo". We have an illness over which we have no more control than someone having a cancer.
I well understand how someone who doesn't live this condition lacks understanding, as Jenny said. Perhaps the one thing to think about is that while one may *perceive* a significant impairment as a hindrance, it really isn't. One can function fully without sight, legs, or hearing. And even if it is more logistically complicated, it is still less of a hindrance than the constant suffering we live by not being in the body we feel we should be in.
My 2 cents ;)
"You say you aren't sick. I disagree with that assessment in some way. I have BIID and I think I am sick. I am sick in that I have an "abnormal" condition, which I think is a mental illness. That makes me sick."
I disagree with this on a fundamental level. I am not sick in either sense of the word. I'm certainly not sick as in "sick and twisted", nor am I sick in that I have some "abnormal" condition. I refuse to accept that anything which isn't bog standard is somehow a sickness.
It is this pathologising of difference that causes so many of society's problems. At one time homosexuality was considered a sickness, as was transsexuality. They are not considered so now and nor should BIID be a sickness.
What I have is something that is different to standard but it is not a sickness, it is merely a difference. Influenza is a sickness, what I have is a problem with a simple remedy.
Dear April, I think that the perception of BIID as an illness or not is probably one of the biggest split in our "community", after those who argue that BIID applies only to those who desire to be amputees.
Just the name of it spells it out. Body Integrity Identity DISORDER.
Whether you call it mental illness, or a condition, or a "problem", the fact is, it's *way* outside the norm. I personally don't see the problem with perceiving BIID as such. The only problem comes when you start buying into society's message that mental illnesses are somehow negative. It is no more negative to have the flu than to have BIID, albeit the impact of the later on your life can be significantly greater. Our preconceived ideas against any forms of mental illnesses is really the biggest issue here.
In the end though, for me, it doesn't really matter if it's a mental illness or a neurological condition, or a "difference". That's of little consequance. What matters is that we be provided with that "simple remedy" you mentionned. And until BIID is accepted as a medical condition (whether mental illness, neurological condtion, or neuropsychological condition), we have NO hope at all to see treatment offered to us (and I'm not talking about *cure* here, refer to my website, the bit cure vs treatment protocol).
Yes, transsexuality was once considered a mental illness. It's what got folks with GID the treatment avenues you needed. I don't believe that given the state of the medical community today, there is *any* hope we can get appropriate treatment options without the label of "illness".
My 2 cents, and in all friendship :)
With regards to the name of the condition I have been using the current name because that's what people will recognise and will be looking for when they search for information.
However, I see no evidence (medical or otherwise) that the symptoms we experience are the result of any form of mental illness. I'll grant you that it's a possibility and I accept that there are some very close similarities between the symptoms of BIID and the symptoms of Body Dysmorphic Disorder but then again there are some very strong similarities between so many things.
I therefore have to say I am incredibly wary of making any sort of judgement based even on an analysis of the symptoms and I have to express concern that the default classification of this condition should be that of a mental illness. To classify as such is premature and seriously damaging to the possible treatment of those who suffer from it.
BIID, like GID, has the common feature of being a discrepancy between the mental state and the physical state. The existence of this discrepancy is what makes the condition into an intolerable one (a disorder), and creates the need for treatment.
It seems that the overwhelming majority of the population at large (and even a significant portion of the populations suffering from these conditions) makes the assumption that to cause such a discrepancy, the 'error' or 'problem' must be with the mental state. I see this interpretation as being built on fallacy, for a big reason:
Attempting to 'treat' the mental state is inevitably unsuccessful. Our minds are far more fundamental to the core of our identity than our bodies are, and it is nearly impossible to overcome this to change a fundamental mental state. This has been shown repeatedly, in cases of various 'identity disorders'. In short, there is no way to change the mental state, to bring it into alignment with the physical.
Conversely, it is (in most cases of what would be considered BIID) fairly straightforward to bring the physical state into alignment with the mental state. Medical technology for safely removing functionality of body parts (or the parts themselves) is fairly well developed. Further, in cases where such adjustment of the physical state to match mental state HAS been allowed (through loopholes in 'medical ethics'), it has resolved the conflict and resulted in the patient no longer being disordered, despite the physical incapacity involved.
This series of factors indicates to me that it would be a mistake to classify BIID as a mental disorder. I feel that doing so would serve no benefit to anyone, and only serve to obstruct understanding of the need for PHYSICAL treatment for our conditions.
That all said, I do feel that it is wise to have something of a screening process, to ensure that there aren't other causal factors that can be less invasively treated. However, this screening should NOT become an indefinite deferral of the physical treatment, continuing to search for nonexistent causes as time passes and the suffering grows. There are times when the harm done by inaction far outweighs the potential harm of a direct action. In my experience, denying physical treatment for those who suffer from BIID is one such time.
April, so nice to see another BIID blog. :o)
I have to say, my BIID causes me **significantly** more discomfort than the flu, though! If the flu is an illness, well, BIID is just that much worse. Any interior condition that causes pain/discomfort/distress is a disorder. A healthy mind and body do not feel pain/discomfort/distress except when applied by outside stimuli. My distress is all in my head, there's nothing wrong with my body, that's perfectly healthy. My spine is in PERFECT condition. Perhaps the only way to correct the circumstance is to operate on my healthy body, but the cause of the dichotomy definitely originates in the brain.
Yes, BIID does cause more problems than the 'flu does to most Western people but influenza is still an often fatal disease in many parts of the world, which is why I used it. It's an annoyance only when treated properly, which makes it a useful comparison with BIID.
I agree that our condition is a disorder, I just don't agree with Sean's idea that it must by necessity be a mental illness, which is something very different to the general catch-all term of "disorder".
A cold is a disorder, albeit a temporary one, and so is schizophrenia but the two carry very different connotations in society and I don't wish to be labelled mentally ill without sufficient reason and most importantly without sufficient evidence.
April wrote: A cold is a disorder, albeit a temporary one, and so is schizophrenia but the two carry very different connotations in society and I don't wish to be labelled mentally ill without sufficient reason
Ah ha! And here you said exactly what I have been trying to say in many ways, perhaps not so clearly. IMHO, the reason so many of us have a problem with the idea of a mental illness is the negative connotation "MI" has in society, and even within the disability community.
The thing is, any other number of conditions also have a highly negative connotation. Blindness, Physical disabilities, etc. How often have people said "I'd rather be dead than disabled".
From my perspective as a disability rights activist, I venture to say that a mental illness, in and of itself, is not negative. It is only negative because of society looking down on it. :)
Another thought ;)
I think it is important to thing and talk of BIID as a disorder, as a medical condition. Ultimately, we probably don't know enough to categorically say it's a psychological thing, a neurological thing, or a neuropsycholigical thing, or something else. And that's fine with me. The thing is, we have to look at it in terms of *disorder*.
To make the argument that BIID is just a difference reduces the apparent impact it has on people. It makes it sound benign, and it's far from benign.
My 2 cents ;)
"IMHO, the reason so many of us have a problem with the idea of a mental illness is the negative connotation "MI" has in society, and even within the disability community."
The reason I have a problem with the idea of BIID being a mental illness is not that a mental illness has a negative connotation in society but in the simple fact that there is no evidence whatsoever that BIID is a mental illness.
I refuse to accept any labels thrown at me for no good reason.
"the simple fact that there is no evidence whatsoever that BIID is a mental illness."
I go one step further and point out that there is overwhelming evidence to show that it is NOT a mental illness. That said, scientific inquiry being as it is, if it were not for the stigma attached to something being labeled as MI, I would consider enduring the errant hypothesis being put forth and disproven, leading to a more accurate hypothesis/theory following it. Unfortunately, the stigma of a label of MI - even when such label is demonstrated to be incorrect - is highly destructive, and remains for countless generations after the errant classification is removed.
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