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BIID, Guilt, Shame, And The Whole Damn Lot
Written by Sean on Saturday, April 11, 2009
My name is Sean, and I have Body Integrity Identity Disorder (BIID). It’s a shite of a thing. There are many negative emotions related to having BIID. Most people who have BIID have, at one point or another, felt guilt and shame. Many have ongoing shame and guilty feelings. And these negative emotions are a major part of the reason most of us suffer.
We are ashamed to feel the way we do. Wanting to be disabled is shameful. How could we possibly desire something that people with disabilities want to get rid of? We are ashamed that we don’t have more strength of character to just evict BIID. We should be have force of will, we should have *control*. The fact that we don’t shames us.
We are feeling guilty for wanting something others are suffering with. We are feeling guilty because somehow we perceive our "secret" as dirty and deviant. We are feeling guilty because our wheelchairs are often of better quality than most paraplegics can afford.
We are ashamed, and we are guilt-ridden and a lot of our energies go fighting these negative emotions.
We really must learn to let go of these negative emotions. The fact of the matter is, we did not ask for BIID. We do not control BIID. It is not a question of strength of character. We can no more control BIID by force of will alone than you can cure cancer by wishing it away. Maybe BIID is a mental illness, a psychological condition. If it is, we have no more control over it than over depression, bi-polar, schizophrenia. And while some medication can help with some psychological conditions, they aren’t helping with BIID. So neither will & character, nor medication can push BIID aside. Maybe BIID is neurological, an actual problem in the brain, as seems to indicate recent research out of San Diego. And if that’s the case, it’s also not within our control.
It took me a long time, but I have managed to do away with shame and guilt. I’m not sure how I did it. There’s no recipe there. Just slow acceptance of my own self. I must admit what probably shook the last remains away was when my late wife, herself a paraplegic from a car accident, accepted me, warts and all. She even told me that as far as she was concerned, when I was in the chair, I had as much right to use accessible toilets and parking spaces as any other wheelchair user. That, I think was the coup de grâce for shame and guilt.
I have completely, totally and utterly accepted that I have Body Integrity Identity Disorder. I have no shame about the fact I have BIID. I have no guilt. Of course, I still live in pain and anguish because of BIID, because I am unable to get the spinal cord transection I need, but that is another story, unrelated to accepting the condition itself.
Claire asked me recently on Twitter if I I trully had no shame or guilt, not even at lying to people about why I wheel. And the answer is that no, I have no shame, nor guilt about that. I do not *enjoy* being dishonest, but honestly feel that it is also outside my control. No matter how you slice it, society isn’t ready to accept people who use a wheelchair for a psychological condition, or even for a neuropsychological one. In a way, it is society’s fault for me having to be dishonest. I know some reader will see this reasoning as pure rationalisation. But the fact is that it would be impossible ot use a wheelchair full time if people were aware that mine is not a physical need.
And so, there you go, my take on guilt and shame. How about you? Where are YOU at with these emotions?
Tags: BIID, Body Integrity Identity Disorder, Guilt, Honesty, Neuropsychological, Psychological, Shame, Spinal Cord Transection, Wheelchair
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5 Comments
2 On 11 April, 2009, Phil said:
Shame and guilt are still companions of mine, but they have shrunken down in size and sometimes they fall back.
Am I really TOTALLY helpless? I know that I can partially “control” my feelings and thoughts, with or without manipulating, in the better case by awareness and like in meditation. But up to now I haven’t succeeded much in controlling BIID.
On the other hand, an alcoholic stays an alcoholic all his life, and only his will can keep him from drinking. Interestingly, the AA (Alcoholics Anonymous) start with accepting how powerless they are. From there they can start to see themselves with realism and find out when and why they drink. Not judging, but just being aware.
Whatever cause BIID has, and whatever ways we go to live with it or overcome it, shame and guilt keep us from growing and from getting on.
Shame and guilt have diminished for me; but other feelings have grown a lot: the sadness that I can’t go on with my life as I had hoped to, the sadness that I can’t overcome BIID, the sadness that I cannot “just live” as I am. I have to say good-bye to illusions, hopes, and a lot of wishes. Maybe that’s normal in my age (mid-40s), but BIID seems to add a big challenge to it.
I find it astonishing how much the guilt and shame has evaporated in the last year. A year ago I had only told one person (my partner) IRL. I had yet to discover ta.org. I’d had no psychotherapy relating to BIID. Venturing in public with leg braces or wheelchair seemed out of the question.
A number of things have helped greatly. Transabled.org has been a big help. Knowing you are all out there with pretty much the same feelings definitely reduces my guilt and shame about this.
My partner has been wonderful. Not that it hasn’t caused problems between us, but she accepts who I am and never tries to make me feel ashamed about it.
Psychotherapy has helped a LOT. My psychotherapist has made it clear that he doesn’t see anything to feel guilty or ashamed about. He encouraged me to just be myself and accept who I am. He has said that if anybody has a problem with it (my BIID) that is THEIR problem, not mine.
It has helped me to talk about it with friends and family. Being accepted has the effect of dissipating guilt and shame. Only two people out of the ~60 I have told so far have had any significant problem with this.
Getting used to presenting as disabled in public helps. No stranger is ever going to imagine that you have BIID. You just get treated as any other PWD would be.
Talking to my GP about it has helped too. She recognises that I have a genuine need to use a wheelchair.
So, this evening I’m going to a concert where I have wheelchair seating. I guarantee that I will be feeling no guilt, no shame, no embarrassment, no self consciousness. I will simply be enjoying Dvorak’s Cello Concerto the way it’s supposed to be enjoyed; in a wheelchair.
@Sasha. I DO understand where you are coming from. It IS possible to work through those feelings. You don’t have to suffer like that forever.
4 On 11 April, 2009, Claire said:
I seek out opportunities for people to attack me in some twisted attempt to punish myself for what I can’t help but see as my own failings. I lash out or refuse to believe anyone who validates me. I know my behavior is toxic but I do it anyway because my self worth has been entirely eroded by a lifetime of self judgement. I need to find a way to stop myself, for my own sake and for the sake of those people around me.
Wow. I could have written that myself, although not so well!
5 On 11 April, 2009, Sean said:
@Sasha, and @Claire,
Finding a way to stop. Trust. Start trusting your friends. Believe. Believe they aren’t lying to you. Accept. Accept yourselves. Courage. Have courage to jump into the unknown, where you may be fightened without familiar (though negative) emotions.
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1 On 11 April, 2009, Sasha said:
Where am I with the guilt and shame?They have taken over, an endless tide. I seek out opportunities for people to attack me in some twisted attempt to punish myself for what I can’t help but see as my own failings. I lash out or refuse to believe anyone who validates me. I know my behavior is toxic but I do it anyway because my self worth has been entirely eroded by a lifetime of self judgement. I need to find a way to stop myself, for my own sake and for the sake of those people around me.