I Have BIID

[ March 2016 note: While my BIID symptoms have lessened since getting my hysterectomy (which helped to correct some of that feeling of overcompleteness) and since going OFF antidepressants, I still experience this sometimes. This is still one of the more important pieces I’ve written, addressing the elephant in the room that no trans person seems to want to consider being sympathetic about, so it’s one of the few posts I’ve decided to keep. ]

BIID: Body Integrity Identity  Disorder. Also known as Xenomelia and Foreign Limb Syndrome.

I was talking with some nonbinary folks on a trans* forum about how what we know about things like phantom limbs and neuroplasticity might apply to us and explain our ability to desire intersexed (or even physically impossible) bodies in the same sort of fundamental way as an FtM or MtF might desire a binary-assigned body, which supposedly can be completely explained by having brain structures unique to the sex they feel they should have been assigned at birth.

Stumbling on resources that informed me that research on phantom limb syndrome has shown that it is possible for sufferers to manipulate their phantom appendages in physically impossible ways, or have fully-functioning appendages that they never had (called congenital phantom limb syndrome). Some trans* men report having phantom penises, and so on. The discussion wound up having me do a search for “the opposite of phantom limb syndrome” perhaps as a means to help explain what goes on neurologically with, say, a neutrois individual who might want no secondary sex characteristics or sexed genitalia despite never not having them. I got a lot of search results about a disorder called BIID, and started reading.

I began to realize that many of the symptoms, coping behaviors, and tendencies match many of my own down to a tee, even though I don’t see any mention of anything even remotely like the sort that I experience. A number of articles and posts about the disorder reference a feeling of “over-completeness”. When I read those words I knew this was what was behind a huge portion of who I am.

From Wikipedia:

Body integrity identity disorder (BIID, also referred to as amputee identity disorder) is a psychological disorder wherein sufferers feel they would be happier living as an amputee. It is related to xenomelia, “the oppressive feeling that one or more limbs of one’s body do not belong to one’s self”.

BIID is typically accompanied by the desire to amputate one or more healthy limbs to achieve that end. BIID can be associated with apotemnophilia, sexual arousal based on the image of one’s self as an amputee. The cause of BIID is unknown. One theory states that the origin of BIID is that it is a neurological failing of the brain’s inner body mapping function (located in the right parietal lobe). According to this theory, the brain mapping does not incorporate the affected limb in its understanding of the body’s physical form.

The basic misconception is that only arms and legs are affected, though once you start doing a little digging, it quickly becomes apparent that that’s far from true. It seems that the disorder can affect your relationship with just about any part of your body; or rather, any part of your body that you are conscious and aware of. It can also extend to affect the relationship that you have not with any particular piece of anatomy, but ability, like being able to see or hear.

The sort that I have seems to affect the entirety of my body, making me feel like I should be smaller than I currently am. I’ve written about this feeling before. I also wrote about it at the Experience Project. Discovering this is a huge, huge deal for me. It informs my gender, my orientation, my sexuality.

One of the things I’ve discovered since having sexual relationship is the strange way that I seem to process touch. Namely, it seems to be diminished and I’m pretty incapable of feeling anything in the way of marked pleasure from intimate contact, even in so-called erogenous zones. I thought there was something wrong with me for a long time, and just as I was coming to terms with the idea of not getting pleasure out of being touched, I discover BIID.

But that’s just one thing that is beginning to make sense now, within the context of the right parietal lobe theory.

The right parietal lobe is the part of the brain that seems to be responsible for the somatosensory system, and feelings of bodily ownership, proprioception, and sensory processing.

The point-to-point mapping of the body surfaces in the brain is called a homunculus and is essential in the creation of a body image. This brain-surface (“cortical”) map is not immutable, however. Dramatic shifts can occur in response to stroke or injury.

A disruption in body image may be linked to something gone haywire in this part of the brain. And at it’s core, BIID is what happens when the brain has improperly mapped an otherwise complete and functioning body. For most sufferers, that incomplete image may mean that a leg has been left out, or a finger, or the ability to walk. Many folks with BIID report diminished sensation in the offending body part.

Over on the sidebar over there, I call myself a sensation whore. I am. I like pain, I like being made physically uncomfortable. I like feeling weighed down and restrained. And in a way, I consider myself lucky that I do get pleasure from these kinds of sensations, since I can’t otherwise. Like I told my husband, I enjoy being hit because it’s my way of feeling something on my skin.

So then, this opens up another question: how might this inform my orientation? Am I saying that this made me asexual? Maybe, maybe not. But if I’m lacking the ability to really feel erotic pleasure in any way that is meaningful to me, then how can I possibly frame any relationship or fantasy of a relationship that I might have within the context of eros? How can I fantasize about something that I’ve never felt, feel attraction by a means that my body is unfamiliar with? Sure, sexual attraction is more than its constituent parts, but like a human being, you still have nothing if those parts don’t come together in the first place. If you don’t fantasize about sexual encounters in a sexual way, if you don’t masturbate, if you don’t feel motivated to pursue sexual intimacy with someone or something else, if you don’t get a sexual thrill from the sexual contact that you do receive, then I would say that these things together result in asexuality. I think it would definitely explain the way that I do tend to fantasize, though. In one of my previous posts trying to suss things out before I knew about this disorder, I talked about fantasizing about being eaten or crushed or dominated physically and emotionally but not sexually. I guess that these are the things that my subconscious mind knew to be more relevant to my reality than sex and it’s taken me over a decade for my conscious mind to catch up.

Maybe BIID is the cause of my asexuality. Or maybe I’m not actually asexual at all. But that’s the hairy intersection of asexuality and disability, isn’t it? Is one responsible for the other? Can it be? I don’t know.

Though I know for a fact that it’s responsible for my macrophilia. They’re two sides of the same coin, really.

Trans* people, as I found out pretty early on in my research on the disorder, hate BIID with a burning passion. Hey, it’s to be expected– if a bear is chasing you and your friend, you only have to outrun your friend to survive. If society is going to call you a sick freak to justify treating you like shit, the first step in justifying your right to exist is to find someone else to call a sick freak and treat like shit. Sure, it may not actually help you in the long run, but it sure feels good to know that you’re not at the bottom of the social food chain at least.

Part of the “sick freak” knee-jerk has a lot to do with the medical establishment’s obsession with pathologizing sexuality, and especially the sexuality of folks it deems abnormal. This is where we got autogynephelia from: the supposed fetish that trans* women have for themselves. Of course the only reason anyone would want to be a woman is for sexual funsies, right? Nevermind that the vast majority of cis women, when subject to the same criteria used to detect autogynephilia in trans* women, apparently suffer from the disorder also.

The fact of the matter is that people sexualize shit that they find pleasurable and things they find not so pleasurable. They sexualize who they are and who they want to be. It’s basically human nature. Some people use sexuality to heal, and others to cope.

I use mine to cope.

If I can’t change my body to reflect who I feel like I should be on the inside, then I damn will find an outlet to let off that building pressure. If I cannot have the relationship with physical intimacy that I truly want, then I’m going to vicariously experience that through art and stories. I’m going to sexualize the very thing that’s causing me distress and discomfort so that I can at least attempt to have a semblance of control over it before it eats me alive. I am going to find a reason to take pride in that unrelenting desire. I’m going to find a reason to like it.

I suspect a lot of folks with BIID might feel the same. We are sexualizing ourselves, our identities, our experiences to make them easier to live with day in and day out. Do we not have the right to find ourselves sexy and attractive just because we have a disorder?

Me, if I was never meant to be small, then I could still imagine other people who would make me feel small.  And also safe. Somehow, in my convoluted daydreams, I knew that they were also keeping me safe from the very thing that was causing me to imagine myself with them to begin with.

Trans* people think that we don’t deserve the same rights, respect, and considerations as they feel they’re entitled to because we “fetishize disability”. Sorry, but this is horseshit, and it’s exactly the same thing as saying that trans* women don’t deserve respect because they’re just fetishizing femininity. We are not doing this for attention or for a sexual thrill any more than a trans* person is, nor should we be robbed of our sexual agency simply because we suffer from mental illness. The debate about the medical ethics of voluntary amputation is a completely different consideration and I’m not going to go into that here. Suffice to say, I’m a firm believer in bodily autonomy, and if someone’s overall quality of life would improve by becoming disabled, then I would support that choice if reasonable alternatives have been exhausted.

Ok.

And what about the gender thing? How could this possibly inform my gender too?

Well, I’ve written about it before. Somewhat. Using fragmented and incomplete language.

My gender is “small”, “cute thing”. I sort of vibrate between pretty fairy boi, manic pixie girl, BMO, and housecat. But those are all just aspects; the real me is nothingness. A ghost haunting a house that belongs to a different family– I might chose to obey the floorplan? But really, I just end up walking through the walls all the time anyway. I barely even care that there’s a house there to begin with.

But really. What is gender but a collection of feelings and affirmations about who we are in relation to our bodies and cultures? Of course “and then some”, but gender is also these things. My gender is both nothing and small. And for some reason I have it in my head that for small, genderless things, puberty is meaningless, secondary sex characteristics are mostly an annoyance, and genitalia are birth defects. Having diminished sensation all over does carry over to my genitalia. I don’t seem to be able to feel much down there other than “I’m being touched” and “ow ow ow”. I didn’t even really consciously or symbolically understand that I had genitals until I was well into my teen years. Why should I? When I touched myself in the shower or whatever, it didn’t feel different or special in any way. It was literally just like scratching my ass. You might say that my brain, for all intents and purposes, has incompletely mapped my innie-junk, and has incompletely incorporated that part of my anatomy into my understanding of what constitutes “me”. To speak a bit more poetically, it honestly feels faint to me. Distant, in a way. I would much rather trade friction and penetration for the simple feeling of something large and heavy simply resting against it. For some reason, that actually allows me a glimpse of what it might be like to have that area of my body fully integrated in the way that I imagine it should be.

I think the research going into BIID (what little there is) might be of interest to the agender and neutrois communities. I for one feel like my gender identity, which consists of both, is for sure informed by the disorder. Who knows, maybe wiring in the right parietal lobe might have something to do with the feeling of alienation from secondary sex characteristics and anatomical sex, in the same way that other structures might be responsible for FtMs’ alienation from their chests and MtFs’ from their genitals.

I don’t have much more to say about the subject, really, other than that this has been an intense discovery for me and has provided me with something of my own personal “unified theory”. I hope that this post might help someone else who struggles with similar feelings or experiences dysphoria of a sort that’s hard to pin down. I’ve spoken to others about this, and there is apparently some evidence to support a link between having BIID and being transgender. I’ve only spoken to one trans* person so far about this, a trans* woman who desires to be paraplegic, but the disorder itself is pretty rare and finding people who have it is proving to be really difficult so I don’t even have anecdata to refute that or back it up.

I’m hoping that I can get back to finishing the next part of the macrophilia series after this. Still, it might take some time. I’m still trying to figure out what this means for my identities, especially if it’s causing them. Do I give a shit if it is? Right now, I don’t think so.

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6 responses to “I Have BIID”

  1. Midori Skies says :

    I think one of the reasons that some trans people say shitty things about BIID, is the fear that cis people will use BIID to discredit trans people. Which they do, sometimes.

    Not that fear excuses anything. Fear doesn’t excuse homophobia or transphobia. Nor does it excuse discrimination against people with BIID.

    Anyway, I am glad you wrote this. It was good to learn more about BIID, beyond just having heard something vague about it in the context of limbs.

    • L says :

      Most of the blogs posts I’ve seen talk about the disorder are rants concerning the comparison between GID and BIID. Which, as someone who’s experienced both, I’m actually qualified to say that they are in fact similar in a number of fundamental ways. No, that doesn’t mean conversations about BIID need to interrupt those about gender dysphoria and trans* issues, but the two dialogues need to be able to co-exist, and they should, from an ethical, social justice, medical, and legal perspective, be able to inform each other.

      When folks need to risk their lives to get the treatment that they want and need because no reputable surgeon in the Western world will perform the surgery under any other circumstance, shit is serious.

      Anyways, thanks. I’m glad I was able to write this as coherently as I did, and I really hope that the dialogue about bodies and what an acceptable body is can be widened with the help of acknowledging other identity disorders like this.

  2. Xavier says :

    Welcome to the club! I’ve been living publicly with this for a couple of years now. Your thoughts and views on the disorder are exactly in line with my own. I have the evidence to back up the reverse phantom in my case, I’ve met and worked with some of the experts in the field (neuroscientists). I have a definite lack of sensation in my left leg (from tests with a neuropen), you might as well be poking me with a q-tip. And often the sensation or even the thought of being touched on my legs is revolting and overwhelming.

    I’m tired of the bigotry and hatred… why does one group who experiences discrimination always feel the need to discriminate against another? It’s sad, but for us, we’re getting it from every direction… the disability community and the transgender community. But I think things are starting to change, at least I have to hope they are. My experiences are the medical community at least is somewhat open minded and willing to examine the evidence scientifically. I think many of us are driven to extremes because of a lack of acceptance/options. Trust me on this, there are non-surgical, non-invasive things that can and do help. The problem is, most of us are too scared to explore them due to the social issues/stigma.

    Oh and the whole asexual thing… seems very common for us as well. If you examine the organization of the parietal lobe, the genitals sit right next to the feet. And the lower limbs are the most commonly affected body part.

    In any case, good, well thought out article. Cheers.

  3. Mandi says :

    Hi just read your article and found it very interesting I was looking to see if I was the only person with biid and wanted to be a woman too my body is completely wrong in so many ways my limbs. And my genitalia all wanting to be removed thanks for making me feel less alone

    • L says :

      I’m glad my post helped you. :]

      And hey, if you feel like you’re a woman on the inside, then no matter what your body looks like or how wrong it feels, you are. ❤

      • Mandi says :

        Thanks yes I think of myself as an amputee woman until I look in the mirror it’s nice to know I am not alone in how I feel though.never been able to talk to anyone about it that’s what makes it so difficult

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