transabled.org

Been there, done that, threw out the tee shirt and then wanted it back :(

Many folks with dev/pretender/wannabe thoughts have tried to purge themselves of their need by divesting themselves of the parts and pieces they use to tame their needs. Most regret it and return, regretting that they have to start over again. Perhaps some are lucky and never return … we’ll never know who those are.

Good luck, perhaps we’ll see you again, perhaps we won’t.

It might be just me but I’ve never hated the fact that I have these feelings. I’ve never wished that I didn’t have them. I just accepted them as a part of who I am and I’m going woth it. Even after my failed attempt, I had no regrets in trying. All I can say is be true to who you are. Don’t run away from that.

Claire, this need to purge you are experiencing seems strangely similar to the last wheeling adventure you had, or rather the aftermath of it. You’ve been there before.

Many of us have faced the desire to purge. I myself have purged several times. I’ve gotten rid of nearly $10,000 worth of stuff. I’ve cut connections. And everytime, it does nothing. Purging doesn’t help.

A very good friend of mine once cut all contacts with the “community”, and tried to repress. I was one of the few people who had helped her through a really rough patch (including suicide attempt). But she asked me not to talk to her anymore. And I didn’t, for 6 months. At which point I heard back from her, it hadn’t worked.

The thing is… Ask yourself what brought you here in the first place? Try to put yourself where you were at before. Were you happy?

I can tell you, I feel you’ve grown in these 7 or 9 months. You’ve learned about yourself, you’ve discovered many things, good and bad, hard stuff.

I don’t believe you can go back. YOu can of course stick your head in the sand, butt sticking up in the air like an ostrich. Ignoring the oncoming train doesn’t make the train go away :(

I feel your frustration. You can’t go back. But there is no easy/simple way to go forward. And being in limbo sucks.

We’re here for you. That’s no concrete solution, but it is support of a sort.

stumpy, I think you’re unusual ;) Most people I know have been disturbed by BIID feelings. Feelings of shame and guilt if nothing else.

Myself, I’m not bothered that I have BIID, not anymore. I’ve left shame and guilt behind. But I am definitely affected by the fact that the solution for me is paralysis and I have no way to get there. I’m stuck with no way to go forward. I can’t go back, but I can’t go forward either. And *that* is what distresses me.

Claire, Sean makes some very relevant points. While you can purge in the sense of getting rid of stuff, breaking off contact, etc. you can’t deny or change what you are. We are all in a situation where there seems to be no good or easy solution. Your sharing of your adventures has really helped some of us, at least it has helped me.
Just remember, that no matter what you do with the wheelchair or how thoroughly you drop out of the “BIID community” you have crossed a bridge. Your acquaintance who saw you in your chair isn’t likely to forget, your husband will always know, and most importantly you will always know what you are if you truly “have” BIID. There may not be much we can do about it but this isn’t something that is easily denied. Remember what you wrote in this, that when you wheel you feel fantastic. Despite the other issues, it must be doing something positive for you.
Good luck with whatever you decide.

Purging is common everywhere in the community. TA, pretenders, devs, everyone. I’ve seen and heard about it from all of the perspectives (that’s not saying much though). I have a feeling you’ll be back, but even if you don’t return, goodbye.

I always enjoyed what you had to say, and how you said it.

Wish I could purge my hearing… :-\

Don’t think I’ve met anyone for whom purging has worked long term but it’s a short term solution. Good luck.

Dear Claire: I have found that when people diagnose themselves with “problems” they are often more correct than any of the so-called professionals could ever be. They don’t live our lives; we do. I knew I was a transsexual before I knew what the word meant, and no doctor can ever be more right about it than I was. Similar, but different.

When I discovered these feelings about my body structure had a word (BIID), I dove into it. I have purged myself of expensive items, including a very expensive brace, and I just came back to this. I think this is because my “problems” were nothing but a symptom of something much bigger, not the disease, as it were. (Sorry to use such a word, but our language is limiting and I want to explain it so it’s understandable.)

Someone who is very smart once told me, “It is much better to knnow where you are going than to get there quickly–do not mistake movement for progress.” When I say this to you, I mean that you should recognize that life is full of crap and full of wonder and full of joy. There seem to be other problems that are also symptoms of something greater, like your relationship with your husband and your children. Purging may make those things seem less stressful for a while but it won’t make your life easier. So don’t just treat the symptoms. This is not the common cold–this is your life. You only have one. Seek out someone who can give you some tools with which to cope with all the symptoms and who can help you to dig down deep until you find the source of those symptoms. I hope that what you find is nothing more than a mild sore that can heal with time. In the meantime, wheel all you want to. Wheel when it’s comfortable for you, and when it isn’t, don’t. You can only please those around you so much, and if it becomes a bigger issue than you feel you can handle, you always have the people on this blog.

Nothing is ever as bad as it seems at first. Best of luck to you in your search for peace. You have at least one friend behind you, even if we’ve never met.

It seems that purging is a necessary step in understanding your BIID. It can show how important it really is to you and how powerful the feelings can be. I guess you can say that I went through a forced purging while I was in the military. It drove me crazy!lol I couldn’t think of anything else. The only reason I wen’t as long as I did is because of the support from my friends in the “community”.

If you do decide to purge and leave, if even for a while, I’ll miss you. I’ll miss reading about your storys and experiences.

Oh yeah, thanks for the compliment Sean:p
Normal is over-rated!
If everyone was normal and everything was usual, life would be so boring.

Claire, please be kind to yourself. While you have these terrible conflicting feelings, you have to realize above all that you have to take care of yourself first, on the most basic levels. Make sure you’re eating properly. Try to develop a routine.

Having a family to care for no doubt makes it doubly difficult.

I don’t advise purging. I’ve tried to and couldn’t bring myself to push the button. Instead, I distanced myself for awhile and came back when I felt better able to handle it.

I’m pulling for you - I pray that you find contentment.

Hugs to you, Claire. How I wish I could purge the BIID or live it, BUT if I were to come out with it my career, relationships and life as I know and love it (other than having to walk through it) would be down the tubes. Purging the gear won’t purge the BIID, I know that from several times around over a span of decades. Like myself you just are not free to act on what you know to be your truth because real responsibilities to people who need you keep that from happening, starting with your kids for whom you are the only mother they will ever get. It’s a lonely, painful road and I thank God every day Sean makes it possible for us to know we are not alone. Again, big hugs to you, walk through it as best you can one day at a time.

Thanks all of you for your kind comments. I’m actually quite stunned at the response! For those who wished me goodbye…I wasn’t saying I was leaving, only thinking about it. But thanks. :o)

So, the conventional wisdom is…purging doesn’t work. But Stumpy had an interesting point as well:

It seems that purging is a necessary step in understanding your BIID. It can show how important it really is to you and how powerful the feelings can be.

Ok, so it doesn’t work, but maybe it has to be done anyway in order to move on to that next level of acceptance of BIID? One of those experiences we all have to live through?

I’ve had a good night’s sleep, a cup of strong coffee. I am not sure I can do it, anyway. The wheelchair is one thing. The dear, beloved friends are quite another. I think, maybe…oh, I could be wrong, deluded, but…I think they need me as much as I need them. And I couldn’t do that to them, even if moments of temporary insanity and despair drive me to think about it. Now I feel selfish.

Oh, part of me still wants to. I *do* want to run away. And hide. But it will just follow me wherever I go.

And yet…and yet.

Can you tell I’m confused? ;o)

Purging won’t work. You have proved it to yourself through the years where you convinced yourself that you were “normal”, whatever normal means. I lived over 18 years as a “normal” nice christian girl and I was still drawn to my feelings. I guess in a way at the moment I’ve partially purged everything. I no longer have physical contact with wheelchairs. I have barely any online contact thanks to world of warcraft but I still find myself pushing my computer chair to my bed each night to carefully get ready to bed as a wheeler. There will always be a part of you that will feel the need to manifest your transabledness, often it is only little things that undermine the best of intentions.

Claire, I’ve also tried purging and it just doesn’t help. In my time I’ve given away three wheelchairs and five pairs of crutches. I’ve tried everything from meditation to prayer. If any of those avenues had been worth going down I would have recommended them. But they don’t work and the feeling just won’t go away. The only true happiness is to be gained from living your life the way you want to live it. You’re not hurting anybody. I’m sure we all feel for you and in our own way we support you.

Claire is one of my best friends in the entire world, and she’s talking about purging herself of her wheelchair, of all things BIID related. But I don’t think she fully can, nor do I think she should.

I meant to post here earlier, and have several unfinished pieces about how I felt when Claire told me about her BIID and our journey so far together. But all that has taken a back seat to now, to how I feel watching her struggle with the decision of whether or not to purge. My heart cries out “No!” because I know it will not make her happy. We are unique, a woman with a physical disability and a pretender. The kind of friends that perhaps every pretender hopes for, and all I know is how incredibly happy she was when she came to see me in her chair. There were moments of confusion as we navigated certain things together, but her happiness is what stays with me above it all. Her confidence and openness in her chair is amazing, her sheer connection to herself is so powerful when she wheels. She is a powerful woman, walking or not, but in her chair she feels her power so much that the thought of her not wheeling makes me feel sad.

I have had moments in which I felt it odd to see her hopping out of her chair to help me with my care when she was here recently, moments when my feelings didn’t lend themselves to words easily, and even some times of being conflicted over her wheeling as it brought up my own disability issues. But do I want her to stop? Do I want any of you to stop? No.

Because that happiness and power is worth it. It is worth every struggle, question, process and logistical issue. I’ve seen it. I know it. I feel it.

Claire is unique; we are a powerful team, and whatever happens we will be beside each other. I could accept her purging if it would mark a step toward deeper acceptance of her BIID, or even if she just grew tired and needed a break. But I write this publicly to be a witness to her incredible happiness and courage in wheeling. And I give it to all of you for the same reason.

There are some disabled people who can accept transability. Don’t stop looking for us. And keep doing what you need to do to be happy.

Wow. I’m speechless. Thank you, Mathilda.

Coming Out…my post about this dear friend of mine.

There is no sense in burnig bridges. Once you cross the river, you will find that BIID will cross with you and if you try to loose it in the river guess what? It floats! It will follow you in your wake. I have tried, I can not shed it, I do not want therapy I love things the way I am. The BIID documentary from the BBC is available from Ampulove, free. Is there any sense in your husband watching it?

Another standout topic and excellent discussion!

As “simply” a devotee minus the pretender or
wannabee desires, I have followed the “purging”
topic when it surfaces or is given mention. It’s a worthy issue as I’m sure it has affected all
of us, possibly multiple times.

Over on one of the Yahoo Groups, we have held a
few discussions on this topic the past months.
I posted there yesterday giving a point out to
the “Purging” thread here, which will interest
many of us active in that Yahoo group:

http://health.groups.yahoo.com/group/fiftiesinbracesclub/

One does need a membership there to post, however the messages are all open to reading with no
membership required.

Thanks Claire, for addressing this. Even amongst
we insiders in the devotee/wannabee/pretender community, it is an often avoided subject. You
have given voice to the feeling of many (if not
all) of us with your introspection and insight.

And, look at all the comments you have generated!

/Art

The BIID documentary from the BBC is available from Ampulove, free.

FWIW, I believe Ampulove is breaching copyright by distributing this documentary.

insane videos put that vid up aaaaages ago…

insane videos put *part* of the entire documentary up a while back. Ampulove is putting up the entire thing.

But this is getting away from Claire’s post ;)

Claire,

You have less chance of being free of your desire to be disabled, than I have of walking more than a few steps without my calliper.

So like me you are going to have to learn to live with it and enjoy life.

As a Polio, I have followed others with the sort of needs and problems you are experiencing for many years and I know of no one who has found a cure. Furthermore,in my experience,the majority of folk with BIID do not really want a cure.

So what can you do about it? First look at the others who share your life and give time to them. Your children, they need your support and care as they prepare for their own lives. Your husband and others who love you are also confused and concerned about you and need your help to understand.

Then find a way of indulging yourself with your needs that does not bring you into conflict with your loved ones and the rest of the world. You will not get this by banging on the door of the medical services and demanding they make your wish come true. Because the first question they will ask is who will do the work you presently should be doing such as caring for yourself and your family.

All of those I have met so far are dealing with this in different ways that suit them. One friend, after years of wearing a calliper she did not physically need, paid to have a procedure that means her calliper is now essential.

Before she had that procedure she spent the evening with myself and husband and her partner and after several hours we were still all convinced it was right for her to go ahead.

For her it has been a good choice bringing contentment and peace with herself. But I have no doubt that the majority of normal people would assume she is crazy. But that also applies to many other choices people make like swopping family for a sordid affair. Or wasting their health on drugs or drink.

Audrey, thanks for generously your insight. I would only pick a couple of points.
Rather than saying “indulging yourself with your needs”, I would say, “take care of your needs.” It’s not a box of candy we’re talking about here.
As far as most people with BIID not wanting a cure, I’m not sure it’s quite that way. It’s more like we’ve either tried or heard about people who tried just about everything and realize that barring some dramatic development that we can’t imagine, there appears to be no cure — since we can’t move out of our BIID, we need to move into it. But, most of us are like Claire, have responsibilities and relationships that keep us from moving that way either. It’s not much fun.

Thank you for your comment Audrey. Please tell us who is the doctor that agreed to do the surgery that made your friend’s caliper essential. I think we’d all like to know that!

audrey, I think there’s some very important concepts missing from your comments. You compare your situation to that of Claire. But a major difference is that while there currently isn’t medical treatment to “fix” post polio, there are procedures to “fix” BIID. Because of that, it is rather frustrating to those of us with BIID to know it’s possible to find peace, but be denied such.

You talk about those with BIID not *wanting* treatment. The thing is, treatment comes in many guises. It might be medication for some, it might be therapy for others. And treatment might also be surgery. The fact is, therapy and medication do not work. Yet, surgery *does* work. Everyone I have spoken to that has had surgery is happier now than the were before.

I will readily agree that there are some individuals who think they have BIID that would likely be unhappy post surgery. But a majority of people have put the time and effort to try and figure themselves out before hand (some have spent years in therapy, and tried medication).

I find it interesting that you spent “several hours” with your friend before surgery. Try spending several years in my body, like, nearly 35 years of feeling the way I do, and a quarter of a century of introspection on the subject.

As Claire points out, we’d love to know who this surgeon is. Please feel free to contact me through my contact form if you don’t want to post in public.

Hi, newbie here, (long time listener first time caller).

Claire, I would suggest if there’s something in your heart thats telling you to purge, then do it.

I like many of the above have purged many times, and it’s really helped to clarify my needs and to a degree my character.
At first i thought this thing was just a childish want, or was it just a need for attention, or just sexually motivated, or was it just me being unhappy or unfulfilled with my life in general that i needed something to plug the gap. I tried many things, even religion.

Each time i’ve purged, the desire to be paraplegic remained consistant, and oddly, it was the motives i mentioned above that never returned.

As a result i’m kinda in the same frame of mind as Stumpy, i’m at peace with the whole notion.

I know for me it’s not just a childish fad, its not attention seeking, it’s not sexually motivated, (although i am still attracted to disabled women and non-disabled women in equal measure)
And its not just plugging a gap in my life, it is indeed a part of the very fabric of my life, a part of my nature, my character, its just me !
I’ve simply accepted it and moved on (so to speak)

Yeah i still get frustrated that i’m not paralysed, but its not all consuming, it has no more of on impact on my day to day life than say running out of loo roll or those bloody automated telephone answering service’s !!!
And yeah i would still do almost anything to become paraplegic right here right now, but i know there’s no magic pill, and i can’t think of any surefire way to do it safely, so, until that happens i’m not gonna beat myself up about it.

I dunno if any of this will help, i can only briefly explain the “BIID” journey i’ve been on, but, purging genuinely did help me put this desire into context within my own life.

I realise you dont know me from Adam, but i’ve seen some of your posts in various locations in internet land, and i think your a great lass, you’ve been very brave to open up your heart and mind to the world, i know you’ve come in for a bit of flac on certain site’s, but i would say, who give’s a toss what anyone else says or thinks. And it’s not nice to see anyone go through the internal turmoil you seem to be experiencing. You look after yourself girl, and do what you gotta do to find that peace of mind your searching for.

Will

p.s +1 for the surgeon’s number

I’m an idiot, forgot to mention the main benefit to come out of purging.

It got rid of the guilt.

Hi Claire. I came back here because I see how many people have written in response to your posting. What a group of friends and allies you have emassed here!! I hope I can say I have as many friends someday.

I wanted to comment on just one thing: Sean said that there are procedures to fix BIID. While I wholeheartedly agree that we should treat the whole person and not just the difficulties, we should remember that our society is such a freakin’ stupid place that insists that people with certain characteristics need to be fixed. The idea that Audrey brought up, that there is nothing that will fix polio, is an unfortunate side effect of being alive today. It is terrible that people get treated poorly because they are different than their neighbor. So many things need to change… the fact that I have BIID is not one of them. I want no fix, so in that, Audrey is right. All I want is peace and the ability to live my life–you know, the one I was entitled to when my birth certificate was signed!

I hope that everyone on here, especially Claire, can find that peace and move into a space that makes you feel valued and accepted by those you love. They are, indeed, the only people who really matter. Oh, and yes, one more thing… as a transgender person, I have lost a good many people who no longer consider me worthy of their love, simply because I take hormones and have a new name. Well, I worked hard to come to a place of peace with their decision to leave me behind, and that sucks, but it’s necessary. In the end, you’re the only one who needs to be with you 24/7. Why the hell should you hate to be with you??? Do what makes you feel right inside and out. *&^$#@ everyone who cannot wrap their brains around it. You don’t need to be accountable to anyone but you.

OK, that’s all. Have a great one!

Sean said that there are procedures to fix BIID

I have??? Where? When?

I fear you may have misunderstood what I’ve said. When I hear/read/see the word “fix”, I equate that to “cure”, and on that basis, I don’t believe there is a cure, but even if there were, I’m not convinced a cure is necessary. What I believe in is treatment protocols - methods, techniques and procedures that would allow us to get the body aligned with our body image and mental map. The goal of these may be to stop having the BIID feelings (I’m sure some transabled individuals would like that), or to simply be more comfortable in one’s own body. I have written in dept about “cure vs treatment protocol” (link on the left sidebar).

I don’t want to be “fixed”, but I do want the option of surgery.

Hi Claire and everyone.

I’ve been looking around the site and trying to grasp what this is about. I have transgendered friends, but have never met any transabled folks before. Please forgive me if I say anything ignorant, as I never even knew about this until today.

A friend of mine had a roommate who pretended to have cancer. She eventually ended up having surgery after complaining of severe stomach pain, and that was when my friend and her other housemates found out that this girl was actually healthy. I’m wondering if this is at all similar to transableism?

Hello Amanda, welcome on the site. It is always tricky to pass “diagnosis” on people you’ve never met, especially when you aren’t a medical doctor and the information you have is rather limited. However, at first glance, what you describe seems to be more like “Munchausen”, where someone pretends to be sick in order to receive medical (and otherwise) attention. Body Integrity Identity Disorder is quite different than Munchausen. First, the vast majority of us aren’t in this for attention. It is a body image/integrity problem. The only reason we pretend to anything is to be able to have our body appear (to outsiders and ourselves) to be closer to what we feel they should be.

Please don’t hesitate to contact us directly if you have more questions (use the contact form, good stuff :) )

Sean asked me where and when he said BIID could be fixed. I have shown it here, but please feel free to comment, question, or explain if I have mistaken something.

On June 16, 2007, Sean said: “audrey, I think there’s some very important concepts missing from your comments. You compare your situation to that of Claire. But a major difference is that while there currently isn’t medical treatment to “fix” post polio, there are procedures to “fix” BIID. Because of that, it is rather frustrating to those of us with BIID to know it’s possible to find peace, but be denied such.”

I see that fix is in quotes here, so I assume it was used in a half-sense. I apologize if I implied in my statement that you meant something you didn’t. I certainly would not want to do that.

Oh, yes, I see what you mean Eric.

By “fix”, I meant that providing someone with an amputation or a spinal cord transection or any other sought impairment, you’ll allow the individual to go forward in their lives and find themselves relatively symptom free. That is the level of “fix”. I do think that “once transabled always transabled” though. Acquiring the needed impairment will nor miraculously make us any less transabled, just that we won’t be affected by our BIID at the same level as without. Does that make more sense?

Thank you, Sean, I think I see what you mean. My friend never said what this woman was diagnosed with but I think you’re probably right that she had Munchausen’s. She also refused to pay rent and told many other lies about her past.