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Cure vs. Treatment - Protocol
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Written by Sean on Sunday, September 10, 2006
First, I should point out that I don’t think that transabled folks should be "cured" of their Body Identity Integrity Disorder (BIID). In and of itself, as unusual as it is, I am not distressed because I am transabled, but because I cannot achieve the paralysis I believe I should have. So this post isn’t about curing transabled folks, as much as offering treatment options for those who desire it.
So what do I mean by treatment?
I mean any device(s), procedure(s) or action(s) that assist someone who is transabled in feeling better. I don’t believe that the optimal result of treatment would be the eradication of the transabled feelings, but I do not reject that possibility.
Self-treatment as opposed to medically accepted treatment
At the moment, most treatment courses must be self-administered as there are no medically recognised or accepted treatment protocols. Ideally the medical community, both medical doctors and psychotherapists, would be able to follow an established set of options, and people who have BIID would be able to be handled appropriately by the medical community (as opposed to the repeated anecdotal evidence we have of transabled people being ignored, abused, mistreated, and refused treatment).
Relationship to the gender community
It is no secret that I believe there are many similarities between transabled and transgendered folks. As such, I draw many parralels in a suggested treatment course.
Relationship to depression
In treating transability, it is important to acknowledge that many transabled individuals also have to deal with depression, and that treating transability does not in and of itself remove depression, nor that handling depression removes BIID. That said, it is usually the case that when depression and BIID are both present in an individual, they aggravate one another. Depression must be addressed in the course of treating BIID.
Treatment protocol
In looking at treatment, there are several main "tools" or steps that may be effective. A combination of each "tool" may have successful result for different people to different degree. Some of the tools may have no effect at all. Some other may raise other unrelated issues. Each step may be followed/used in any order desired, except for surgery, which always should be a last resort.
- Medication
- Psychotherapy
- "Pretending" (full or part time)
- Surgery
Medication
While I have had no success in using medication to mitigate BIID, it is possible that some other people would have success. Medication may also be successful in reducing the effect of depression on transability, and as such could prove useful in focusing an individual on the issues of transability.
Psychotherapy
Psychotherapy is important for the individual to gain a better understanding of themselves. It is not unusual for transgendered individuals to embark upon therapy with the goal of undergoing sex reassignment surgery only to discover that they don’t really believe this is the option for them. I have met many transabled individuals whom I think would discover that an actual impairment is not the answer for them, and this could be found during therapy.
I also know of someone who has succesfully managed her transability just through therapy, and went from needing to be a DAK to being quite happy being AB and not have a disability.
Pretending
I use the word "pretending" rather losely here. Perhaps the concept of "real life test" would be more appropriate. Using a wheelchair or blindsimming may be a good outlet to release frustrations or to feel better, and as such, can be a valuable technique. Some people report that using a wheelchair full time while not being disabled evokes greater frustration as they feel they can almost touch "it", yet it is always just out of reach. Others report that they feel much better when wheeling, pretending to be an amputee or blindsimming.
It is my opinion that before going for surgery, someone should experience disability as near as possible through long term "pretending". While it is not possible to fully know what it will be like, it gives a greater insight than would otherwise be possible, and I think many people would have a change of heart.
It is also possible that people would decide that this would be enough for them, that they don’t need to go for surgery in the end. This also happens regularly in the gender community, where people end up living full time in their gender "of choice" without actually going for SRS.
This is a difficulty for those who wish to be amputees. Obviously, it is easier to sit in a wheelchair and be perceived as a paraplegic or put opaque contact lenses and go out blind than it is to hide a limb. There might be options to create restrictive braces that may simulate a mobility impairment. This wouldn’t be anywhere near the real thing, but might be an option.
Surgery
Finally, the option of surgery. I don’t believe that surgery is the answer for everyone, but certainly for some. And because it is so irreversible, the decision to do surgery must be arrived at after careful (and guided) consideration.
Successful result?
How is success measured? As I already said, I don’t think that the eradication of the transabled feeling should be the benchmark, but this may be success for some people. To me, success would come when the individual is finally at peace with themselves and their feelings as it relates to transability. They may still feel depression to some level, but transability would be kept at bay, or "resolved".
Once transabled, always transabled.
I firmly believe that one remains transabled even once they have resolved the issues in whichever manner that worked for them, whether it’s therapy, surgery, or full-time pretending. I think the transabled feelings don’t leave you, they just leave you in peace. Yes, you may have undergone surgery and now be an amputee, but you still have BIID.
[tags]Transabled, BIID, Therapy, Medication, Protocol, Treatment, Cure, Body Identity Integrity Disorder, Blind, Blindsimming, Amputee, Wheelchair, Paraplegic, Paralyzed[/tags]This entry appears in Don't Miss, Sean's Thoughts, Thoughts. You can follow any responses to this entry through the RSS 2.0 feed.
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49 Comments
2 On 10 September, 2006, Sean said:
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Cost is most definitely something of a problem. But even if such costs aren’t picked up by insurance, at least it would be an option. If you tell me it would be $40,000 for me to have surgery, even if I don’t have it, at least I can save towards it.
Again, relating things to the gender community, some insurance companies pick up cost of hormone/srs, some don’t, but everyone knows they have that option to work towards.
Sean,
I have grown to deeply respect your out look and your opinions. I\’ll never forget the first time I found this website and saw the word \”transabled\”. I think the floor actually shook and lights became brighter. It was like \”yes, yes, yes, that\’s it\” The perfect word to describe us.
I just want to say to this article….I believe that this cannot be cured. It can not be cured anymore than someone can be cured for having white skin or red hair. It is not about being cured, it is about being who we are, how we were made. Before I found all of you out there, I thought something was wrong with me….I thought I had this deep dark secret that I could never ever share with anyone, I know these feelings were the cause of my total lack of self-esteem when I was younger….I could look in the mirror and see a pretty girl with a nice body….but I could not look her in the eyes….these feelings inside would build and build until you have to do some kind of pretending just so you don\’t explode, but my God the guilt I felt afterwards. I just knew that there was a glitch somewhere in my makeup. Somewhere along the line I learned a little about sexual fantasies and fetishes….I started thinkin that maybe that is all this is, but I knew it was more, this was a need. It has been about 4 years now since I first decided to take the plunge, find out how to erase the history from my computer and start searching. I know each and every one of you knows the feeling of elation and relief I felt when I saw that I was not alone. There were only a few sites then and most were on amputees, but they were there…I am so happy with the way we have grown, online at least if not yet mainstream. The one thing that I know now with absolute certainty is that we were all born this way….gays, lesbians, transgendered, transabled. It is there, it has always been there and it is not going away. We may need help dealing with it or accomplishing it, but it is there to stay.
That said, I am going to take it one step further, and this is where I may get into trouble….but not only did I think I was a freak for needing to sit in a wheelchair, but I also am attracted to blind men, and have even done some blind pretending myself, although, I know that was done out of curiousity and not need. I believe that these \”devotee\” feelings go hand in hand with being \”transabled\” I have encountered many people that were just one or the other, but alot that were both. These feelings are just there as well, they are part of our programming and can also not be cured. One thing that I have struggled with immensely is that all of the philia\’s are the same way. They are there, they are not going anywhere…some of them are very very bad…but I have to apply the same rules to all. People cannot be cured of pedophilia any more than they could be cured of amaurophilia, and as much as I don\’t like to be put in the same category, I can only say that we need to have a harmless and harmful category for the philia\’s. I guess we could take this information of knowing that this can\’t be cured into account when we think about releasing \”reformed pedophiles\” CANT BE DONE There is no reform…..there is no cure….it is what it is. Here is where I struggle as a mom, as a christian and as a amaurophile, these people are like us. They might be totally normal people except for this urge they can\’t shake. I would be willing to bet that 95% of us are just normal everyday people with normal everyday problems and not monsters….some may percieve us that way even, but we aren\’t….what about those others?? Now that is some difficult stuff to think about.
4 On 17 September, 2006, Sean said:
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Hello Alyndra, thanks for taking the time to share your thoughts :)
First, I agree, this cannot be cured. It’s part of who we are. Doesn’t mean it can’t be treated. This is why I’m discussing treatment options. Not to cure, but to help dealing with it. As you know, being transabled affects different people differently, but a majority of us are unhappy.
Second, I must disagree with you on devotee and wannabe going hand in hand. Yes, they often occur in the same people and have some degree of relationship (in that it focuses on disabilities), but I think it’s a mistake to say they go hand in hand. It would be a little bit like thinking that HIV/AIDS and gay guys go hand in hand. It’s not because you have HIV that you’re gay, nor because you’re gay you’ll automatically get aids. Same thing for wannabes. You may or may not be a devotee as well, but one doesn’t automatically mean you’ll be the other as well.
Finally, while I understand your comparison to paedophilia, I think it’s a very dangerous analogy. The problem is that a majority of us who understand the issues behind being transabled and/or devotee can see the single most biggest difference: We are not dangerous to others. But for others who aren’t transabled, and don’t know about devs and our world, this comparison is entirely too easy, and as it is wrong, it isn’t something I tend to suggest.
It’s one of the reasons I don’t like to think of this in terms of a “philia”, which gives the idea of *deviance*. There may be devs who are sexually deviant, but I don’t think that in and of itself devs are perverts. And there may be some wannabes who get turned on at the idea of being an amputee, blind or paralysed, but that’s not the majority of the people I have contact with (incidentally, those wannabes who are sexually turned on at the idea of being disabled have tended to be, in my experience, individuals who were also devotees).
Observations:
Medication/Psychotherapy assuming the medical personnel have an understanding of BIID symptoms and contraindications. Too many people out there have been assumed psychotic or schizophrenic over BIID.
Pretending: Dunno if the world is ready for this yet. If people decide they DON’T want it, will the pretending episode mark them for life as outcasts. I guess it already does for GID people. Anyone have any experience? Until the world accepts people with BIID, and THEN accepts they could get it wrong and want to back out, could see reasons to make a good cover story for why one was in the chair/blind/deaf/limb restricted.
Pretending the difficulty of being an amputee would be relatively easy with a plaster cast. if anything it’s more difficult to get around with a stiff, straight leg than with a stump or a decent prosthetic. Would certainly make the ‘pretender’ appreciate what being on crutches is really like. And if they don’t like it, the cast comes off, in a ‘plausibly deniable’ way. All that assumed leg amputee, I’m sure similar can be done for arm amp.
Hi Sean,
could you please tell us more about the person you mentioned in this sentence of yours:
“The author also knows of someone who has succesfully managed her transability just through therapy, and went from needing to be a DAK to being quite happy being AB and not have a disability.”
How did she do it? What kind of therapy? How is she now?
Thank you, best wishes
Phil
7 On 14 October, 2007, Sean said:
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Phil, I can’t get you much more info than that. I’ve lost touch with her several years ago, and she seems to be very busy indeed. I suspect that she’s just keeping so busy she doesn’t have time to think about it, but that might just be the cynical part of me speaking.
Dear Everyone,
I have learnt of your problem about one year back, when reading an article. Being disabled myself, it sickened me to no end to hear that people are beginning “legitimately” to be allowed to disable themselves. It took me all year to decide to investigage further.
First, the term “transabled” is a sick pun. Because there is not one disabled person who is not “transabled” — that is — not one, who does not wish to be able to do all of the things they cannot do, due to their condition. They live with their conditions not out of an inordinate amount of courage and determination, but because they have no other way to live. They live the best they can with what they have.
Of course, we learn from our disabilities, as much as people learn from everyday experiences. It is nothing unique to disabled people to be able to search inwardly into their souls.
Secondly, the comparison with the gay and trans communities is also sick. It is one thing to get over the fear of difference enough to be able to date a really cool person with physical or mental impairments (or not to have that fear in the first place) — quite another to require that of a partner, or of oneself.
Being transgendered, gay or lesbian is not a mental illness. It also does not involve harming a member of society, even if that member is oneself. BIIDers may not be physically dangerous to others — but they are dangerous to themselves. For the same reason people are not allowed to take crystal methamphetamines, they should not be allowed to hurt themselves, or to require others to hurt them (i.e., doctors).
Janelle
9 On 16 August, 2008, Sean said:
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The concept of “harm” is an interesting one. I know many people who would argue with you vehemently that removing male genitalia to create female genitalia is indeed “harming” the body. Further, one cannot look at “health” purely from a physical standpoint. It is the combination of mental health and physical health that provides the whole. While becoming paraplegic would undoubtedly “harm” my physical self, the whole of my well-being would be increased. After all, doctors amputate limbs affected by life-threatening cancers. BIID is a life threatening condition - many people have died because of it, and I am “lucky” to be alive after nearing suicide several times.
So, Janelle, what would you have us do? Psychotherapy and medications don’t touch BIID. What else can we do?
Everyone,
I don’t think the possibility of finding a way to permanently rid a person of these feelings should be dismissed out of hand.
In recent years scientists have found that the brain can be plastic, and can change.
And therefore if somebody has such an intense desire/need to become an amputee or paraplegic, maybe it is because the limb or lower end of the body isn’t properly integrated into the somato-sensory complex. While no current drugs or psychotherapy seems to work well, maybe someday there will be some form of physical therapy or other way to stimulate neuroplasticity that can reintegrate that limb or lower portion of the body into the person’s brain body map, and make the limb or unparalyzed condition feel Right.
Also as somebody who has had and is being treated for severe auditory processing disorder, I could easily understand how some people with severe APD, could experience their hearing as more of a nuisannce than help, and could experience a strong attraction to ASL. I often felt intensely attracted to Sign Language, but never carried these feeling to the point of wanting to be deaf. But I considered learning ASL several times, but generally embarassment because I had been accused of “faking deaf for attention” so much as an APD won, unfortunately.
As for severe Visual Processing Disorder (VPD) there is a very real resemblance to people who have their vision restored after having been blind from birth, and find having the sense of sight stressful. And by resemblance, I mean that people with very severe VPD often have deficiencies in their ability to use their sense of sight that are very similar to vision restored adults who were blind from birth/early childhood.
So I would strongly recommend that people with the wish to be blind or deaf, to at least get tested for APD or VPD. And I know from experience that the treatments for these conditions can make you experience the afflicted sense very, very differently and its much nicer.
For people who have APD, I would consider learning sign language a good way to build up some of the indirectly imparied parts of the brain, even if the person doesn’t want to be deaf (reading faces, being multi-lingual, slang, non-literal metaphors etc, abstract thought, and more).
Also I think if somebody’s brain and body or senses don’t connect right, sometimes the desire to present oneself as disabled, can be a desire to express openly, what the person already feels, but can’t put to words.
Janelle,
You are right that most people with involuntary disabilities, would like to get rid of them. And with biotechnology more may get to.
11 On 30 August, 2008, Sean said:
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Dear Meredith, You are right, of course, new discoveries keep on happening, and more research into BIID is required. But for many of us, the problem is that a possible “non invasive” solution in ten or fifteen years, heck, even five years, is just too far out to fathom. Even the best submarine reaches a depth at which it can’t remain long without being crushed by the pressure. A new feat of engineering that would improve submarines and allow them to stay deeper longer is all well, but does not help the submarine that is already deep near the ocean floor, creaking and cracking about to implode! Sure, let’s find a non-invasive solution, but let’s not condemn people to live in utter emotional hell while we’re looking. Would you refuse an experimental and controversial new cancer drug to someone who is terminally ill from cancer, because maybe next year or the year after they’ll find one that doesn’t have such strong side effects? Fat lot of good it’ll do them when they’ll discover it, after their death.
Sean,
There is one big difference between between terminal cancer and BIID. Terminal cancer is usually fatal in a short time. People with BIID may sometimes comit suicide, but can often learn to keep themselves together with tactics such as pretending or psychotherapy.
I don’t think it’s wrong for people with BIID to “pretend” to manage their condition. But if you amputate a limb or sever a spinal cord, only for a more successful treatment to be found in the near future, it could be a really poor decision!!
Furthermore, this isn’t neccessarily a “ten or fifteen years” deal. Even now, sometimes physical therapy can sometimes influence the somatosensory cortex. This is sometimes done for people with fantom limb issues. Or with dystonia and dyspraxia.
Most of the treatments I’ve heard about for BIID involve either psychological treatments, medications,
pretending or surgery. Has physical therapy ever been tried in combination with talking cures, psychotherpay, or behavoiral therapy?
Have many people with BIID ever been tested for sensory processing issues or conditions such as dyspraxia or sensory processing disorder if they want paralysis or amputation? Or APD or VPD if they want to be blind or deaf?
And I may be going out on a limb here, but I have had experiences with having my own brain body connection radically changed. I was dyspraxic most of my life, and as a child did some stuff that was VERY similar to some of the early “pretending” especially that described by “Marisa” in the “Early Memories” section. Although it never went to full blown BIID in my case, I DID feel that my body was never meant for me, until I got help from an institute in your country (I’m American) called the INPP in Chester England, with what was then one of the only practitioners in the West Coast USA.
Now I feel fine in my body, and can’t tell you what a transformative experience that has been.
Furthermore, having had APD I never fully wanted to be deaf, but often wished I could turn off my sense of hearing at certain times. And I often really wanted to learn ASL.
It seems to me that for someone with BIID it would be worth at least getting tested for senosry issues and seeing if physical or sensory therapies could make them feel better with their bodies and senses.
13 On 30 August, 2008, Sean said:
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I’m near dying. I’m in the terminal phases of BIID. I am not being melodramatic here, just stating what it feels like. We humans tend to be very resilient, but we all have a breaking point. And I’ve started to crumble.
What is so bad, so negative, about paraplegia that everyone seems to think it’s worth fighting like the devil in holy water to avoid that faith? There are MUCH worse faiths. Much. And the kind of emotional hell I’ve been livingin continuously for well over 5 years now is one of these.
I really do not understand, WHAT is so important about being ablebodied? Why are we always expected and forced, more or less, to be that which society considers “healthy” ?
Why must we want to be healty?
Let’s see there are the health problems, the extra expenses, the time spent on personal hygeine compared to other people even those with various handicaps, the jobs that would be off limits, and more.
Yes, many people with SCI do have good lives. But it’s a very disadvantage in many situations.
Sean,
If you are so close to breaking what could it hurt to try and see if a physical therapist could be any help?
Meredith, there are disadvantages, for sure, but it’s a matter of whether having a handicap is “worth it” for feeling comfortable in your own skin. In my case, and many others’ cases, I feel that it is indeed worth it.
Just yesterday, I encountered some really crappy situations as a wheelchair user, but even despite the crappiness, I found that living as a wheelchair user was worth it, because I finally felt like myself. There’s really no substitute for that.
Physical therapy COULD help, but that’s an avenue that’s been tried before. Maybe we’re missing something, maybe we’re not…
17 On 31 August, 2008, Claire said:
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Meredith, you are assuming that these problems are worse than those that are currently caused by mental illness. Your assumption is that mental illness isn’t “real” because it’s not physical, and that it does not therefore have a real impact on the individual and on society as a whole. That assumption is wrong. Please read this TIME article on the real cost of mental illness: http://www.time.com/time/health/article/0,8599,1738804,00.html
You’re also assuming that disability is a fate worse than death. That assumption is also wrong. Ask those who are disabled if they’d rather be dead. The overwhelming majority would say a resounding NO. Because of your negative bias towards disability, you are quite happy to allow severe BIID sufferers to risk death through suicide and self-injury attempts before providing them with safe access to surgery in cases where everything else has been tried and the BIID sufferer is in imminent danger of death from BIID-related causes.
I agree that surgery is not for everyone and that it **IS** indeed worth looking into these other avenues for many people, and for future generations. However, time is running out on some people. For THOSE PEOPLE would the medical community please stop fucking around and prating about ethics and “maybe try this therapy” and “maybe try that therapy” and give them the one therapy that we KNOW FOR SURE WORKS **NOW** need in order to save their lives NOW.
Gordo,
Actually the ultimate way to cure this for physical or neuroplasticity based therapy would *likely* be a matter of integrated that limb or portion of the body into the somato-sensory complex. There might be some way that physical therapy could accomplish that task, or perhaps some of the newer brain treatments like Trancranial Magnetic Stimulation (TMS) which is sometimes used to depression and is being tested for Asperger’s, in addition to a number of problem in the brain.
And I think the chances that medicine would find some way to cure this, are good. And that a pretender might be able to benefit more than someone who already had the surgery, for obvious reasons.
Claire,
Actually, I’m very familiar with mental illness, because my own family has more than its share.
And some of what some of the people on this web talk about under early experiences, aren’t even that foreign to me as a former dyspraxic with auditory processing disorder. I did a lot of the same early imagining and early pretending stuff when I was a child-although it never developed into BIID.
But it wasn’t until quite recently in my 30’s, that I found the right physical and auditory therapies, that I ever felt right in my own skin at any level.
And I never said, that I thought disability was worse than death. I know a lot of disabled people. And they wouldn’t rather be dead, but most of them would take a cure if they could. I know paraplegic who watches the research on stem cells and other treatments like a hawk.
20 On 31 August, 2008, Sean said:
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It comes down to normalisation, doesn’t it? We are expected to be “normal”, rather than “happy”. And perhaps for some people normal=happy. But I’m tired, weary of the quest for normalisation.
Sean,
I think the medical, practical, and temporal issues associated with paralysis or missing limbs that go beyond either societal prejudice or ideas about what’s “normal”.
Some people who get those conditions involuntary, simply can’t adjust to their new reality psychologically, but some do. If many people who had self-images that said they had four mobile limbs, can adjust to a different reality once they were injured into a different condition, why are some people unable to get used to an able-bodied condition?
I don’t consider it unreasonable to look for a way get rid of BIID feelings entirely.
As for “normalization” what does that mean? I resisted my mother’s assumption that my issues could be cured by make-up, clothes, hair-makeovers, and high heels, along with psychotherapy. Because it was useless.
But then again, when I did things like the INPP program, TLP, and IM, I was accused of being on some question for normalization.
So the issue isn’t “normality”, it’s about finding the root of the problem and correcting it.
22 On 31 August, 2008, Sean said:
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If many people who had self-images that said they had four mobile limbs, can adjust to a different reality once they were injured into a different condition, why are some people unable to get used to an able-bodied condition?
Because there is no current way to regrow limbs or to fix the spinal cord. And while there is research in spinal cord “fixin’”, the result is not on the near horizon. People who have such physical impairment have it “easier” to grieve and accept. For those of us needing to be paralysed, it is very difficult to get to that stage, considering how *simple* it would be for a doctor to actually do the surgery that would finally make us whole.
Actually there is a good chance that it would be easier to find a form of physical therapy, TMS, or other treatment to integrate existing body parts into the somatosensory cortex, than it would be to regrow a spinal cord.
And I don’t think people who became paralyzed before anyone even thought that a cure would EVER be possible had it “easy” at all. Even now with some research on the horizon, I think people find it extremely difficult.
24 On 31 August, 2008, Sean said:
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I didn’t say that they had it *easy*. I said they had it *easier*. It is easier to reconcile yourself when there is no way out than when there is a way out, just out of reach.
BTW, as to somatosensory stuff, Dr. Ramachandran, a neurologist at UCSD has been doing research along those lines for BIID. No results yet.
This “”Trancranial Magnetic Stimulation (TMS) which is sometimes used to depression and is being tested for Asperger’s,”" is another sign of medical dictotorship, people with Asperger Syndrome often are very able to do science and tech things, they do not want a cure, the problem is society, which views diversity, difference as a problem, that needs to be fixed, THAT view is the REAL problem.
Medical dictatorship? I’ve talked to the crowd who argues that Asperger’s shouldn’t be cured, and they tried to talk me out of having neuroplasticity based treatments for my auditory processing disorder. Frankly, I have no patience for that crowd.
I hope this isn’t regarded as flaming but I have to wonder of Meredith has patience with any crowd that doesn’t live inside her head.
Well, that shows how people with a medical view are…
I have a bit of patience for them, but not much. Diversity is the storehouse of evolution.
Anyone who wants to “cure” difference, in a way want people who are different, either in body or mind, not to exist the way they are.
There is no cure or treatment for BIID at this time, BUT we are in fact managing this condition, some more successfully than other. I know the word “managing” has been a buzz word of the day for some time, just like “teamwork”but most of us, according to the postings and comments here are managing the condition. The results are not perfect and success does vary greatly from one person to the next.
I used to think “managing (insert terminal illness)” was just hype and B.S. and was just the latest gimmick to keep those suffering with in a positive frame of mind and not think in terms of the ultimate, but we are in fact managing our condition. And we have figured out how to do it without much help from medical professionals.
I actually used to be “transabled” in that I wanted to be a paraplegic. It lasted between the ages of 5 and 19, and then sort of went away. Around 20, the feelings simply left me, and I don’t really know why.
31 On 1 October, 2008, Sean said:
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That’s interesting Grace. How old are you now if I can ask? I found that the feelings come and went until my mid to late 20’s, but came back in strength later.
Yes, that *is* interesting. I am wondering if there is a “typical” time course for BIID, or whether we are completely all over the map.
My greatest childhood intensity was from 7 to 12. I made a deliberate self injury attempt during that time. From 13 onwards I seemed to manage it alright with splints and bandages. Then it started to get very intense again two years ago. Now, contemplation of self injury is a daily occurrence.
I know someone who had similar childhood feelings to me, at a similar age. She wanted to be paralysed, in a wheelchair. She said those feelings went away, and didn’t come back.
Could there be such a thing as childhood BIID which goes into permanent spontaneous remission? Or is it something different?
There isn’t really a way to know, is there? I mean, I bet there are lots more people with BIID who just think they’re crazy and don’t bother to look it up. Or if they’re kids, it’s just a “phase”.
I’m not sure what my attitude towards wheelchairs was when I was small… I hardly remember elementary school at all. (Weird… I don’t even remember my parents getting divorced… o_O)
I’m 33. After the age of 20, these feelings just went away and never really came back.
There were a lot of changes in my life. I left home, went to college, started studying Ba Gua. My interests became more active.
I don’t know if any of these things were causative or not. Or it the issue simply “ran its course” on it’s own. Now I can’t even imagine wanting to be a paraplegic. And it’s wasn’t about “Oh, I learned how hard it is to be a wheelchair user.” Nor do I think maturity was the key.
As for childhood BIID? I don’t know. I suspect that people’s sense of identity, can be in flux at any age, albeit more so in a younger person. I think even with children who have very strong early cross gendered behavior a good percent don’t grow up to be transgendered.
I do have one memory of being on a hike in the mountains, in short when it was a bit cold for them, dirty and sitting on a rock tired but satisfied. And I really distinctly remember thinking “Ya know. My legs and lower body DO feel like a part of me. What was that business of wanting to be paralyzed all about?” I was a Sophmore in college at the time, and also associate that hike with a lot of joy and the John Denver song “Rocky Mountain High”.
I don’t know if my brain just figured out how to adapt to having legs, or if that hike was a curative emotional experience.
I think I probably did experience my legs before as “not me”, and am not sure how long I started to physically experience them differently before that moment in the mountains. Maybe it was a few minutes. Maybe several months. I have no idea. At the time I was relieved to no longer want such a strange and inconvenient thing, but didn’t go into a whole lot of introspection. But looking back it seems that some sort of shift had occured and perhaps started before the hike. In a way, I regret not examining these feelings at the time when they were fresher, rather than just getting on with the business of being a student.
Tora, that’s a good point. When I was your age I had no idea that there might be other people like me. I didn’t dare share with anybody how I felt until about eighteen months ago.
Grace, thank you so much for sharing this. I very much appreciate it. What you wrote was extremely intense for me.
I hike a great deal; huge strenuous hikes that give me a lot of joy; hikes that will be completely impossible after I am paralysed. There is nothing that I shall miss more. This has been my last little hope that I might avoid the consequences of BIID; hope that I might find the joy of using my legs to hike would override my need to be paralysed. It hasn’t happened. I just end up torturing myself with grief every time I hike. I grieve for the loss that will come.
I am absolutely excited that hiking was a part of how you avoided BIID. It makes me think I was not so stupid to have believed that it might be possible. I am truly glad that you found it possible.
Chloe,
I don’t think the hike actually caused it to go away. That was simply the first time, I noticed that those feelings simply weren’t there anymore.
Like I said, I’ve no idea if this shift happened that day, or if it had been in progress for months. But either way, I don’t think hiking caused it to go away. I suspect that it actually went away on its own accord. And I’ve honestly no idea why.
Like I said, in a way I wish I had examined it more at the time. But I was too busy being a student, then. And who knows maybe if I analyzed it more, the feelings would have come back. That is I don’t think they would have come back, but you never know.
Grace
Thanks for the clarification, Grace.
On further reflection I can see that I have been using the hiking as a barometer of my deeper feelings; not just about the hiking per se. It always comes out the same. My need to be paralysed dominates everything.
Thank you for helping me work through some feelings about this.
This may be a question answered elsewhere in the site, but what are the pros/cons of surgery vs. alcohol injected into the spinal cord or other methods? I am only asking in a rhetorical sense assuming that these methods were delivered by qualified medical personnel.
40 On 25 October, 2008, Sean said:
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Surgery is safe and “guaranteed”. Alcohol is risky, may cause *extreme* nerve pain, and you may not get the level of paralysis you want.
Ahh thank you for the clarification. Unfortunately for us the information out there doesn’t necessarily paint a full picture of the risks involved with different methods of obtaining our desire. I am not by any means contemplating self-harm, only wishing for something that the medical community has every power to provide and won’t.
42 On 25 October, 2008, Sean said:
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Yes, you and I both. It really frustrates me that a relatively simple procedure keeps on being refused to us.
Just trying to follow the logic here. As I understand it, you would consider assisted suicide as a treatment for depression? When a person has a delusional disorder, the reasonable course is to remedy the delusion, not try to conform the world to that delusion by helping them maim themselves. Mental disorders being the elusive things they are, a cure may not be possible in some cases. Whether the underlying delusion can be cured or not, it is outrageous and criminal to suggest that we should assist a mentally ill person in harming themselves. If I was convinced I was a fish, should doctors be grafting fins onto my body and removing my lungs? Maybe the more rational course would be to help me to understand I am not a fish. Even if I never get over my delusion, it should never be considered as an option to medically maim me to make me more comfortable with my delusion.
44 On 21 December, 2008, Sean said:
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Chris, I would not consider assisted suicide as a treatment for depression. The difference between BIID surgery and suicide is that suicide is final, it is the end, whereas BIID surgery is a new beginning, a re-birth of sorts.
You keep using the word “delusion”. But delusions are not part of BIID. This is not me saying so, but highly respected medical professionals such as Dr. Michael First (chief editor of the DSM), and other professionals as well.
You also talk about “harm”, you’re saying that becoming an amputee or a paraplegic is “harming oneself”. You appear to imply that health is only physical. You are in fact saying that an impairment is a negative. This is not how most people with disabilities view their own impairment.
Sean is right. There is nothing whatever delusional about BIID, anymore than acute anxiety or OCD is delusional. Plenty of mental disorders don’t involve delusions.
As for depression, a person with a real biological depression can recover to the point of no longer wanting to commit suicide.
No such recovery has been found for, or observed in, BIID.
I know it was said over a year ago, but Chris’s comparison of trans(gender/able)ed to “I think I’m a fish so I should be allowed to get my lungs removed” is annoying. Not because it’s insulting to compare us to furries/otherkin/whatever they’re called, but because science isn’t there yet. If we do have the technology to replace lungs with functional gills and otherwise adapt the human body to live underwater and a human can succesfully live their life underwater that way- why not? But we don’t. We do, however, have the technology to do a succesful amputation. Not sure if we do on paralysis or making someone blind/deaf, but we can make people amputees without too much fuss, and they can get on with their life.
We allow people to get their ears pointed or as if a bite was taken out of it, long canines grafted on, “insane” levels of tattooing that completely change the way our body looks, giant holes in our ears or other parts. But those are all allowed with no therapy whatsoever. Why is that all totally normal and acceptable (’acceptable’ in the loosest term), but wanting to live underwater or not having a limb or being another gender is delusional?
Also- I really wish people would stop insisting BIID and GI/D are two totally different things. They’re separate, but the parallels are endless. The only reason they might be is because the transgendered community ignores bodily dysphoria, which bugs the heck out of me because that’s all I (and a few people I know) have.
Many fish are transgendered. The fish don’t seem to have a problem with that. I wonder if people with transphobia refuse to eat such fish.
Being able-bodied is normal. What is not normal is bad. Different is bad. Why can’t we understand it?
Yeah, that’s what a lot of this talk is about. The basic difference of world view. It’s like the difference between medical and social model of disability. The medical model sees impairment itself as a disability that needs to be fixed. The social model (called the Independent living model in the USA) sees an impairment as something neutral, not as something that needs to be fixed. The social model wants to fix the physical, emotional and social barriers that make an impairment into a disability. Many people with disabilities are offended by the medical model. They don’t want to be fixed. They can appreciate diversity. But they do want to find peace with themselves. And that’s what we transabled folks want too. We want our peace, our happiness and joy. And if an impairment can help us to find it, if an impairment can free us to be more active members of society, why not? Because when it comes down to it, able-bodied person is considered better than a person with disability. So we should be happy to be those better and more valuable members of society, right? I am so tired of it. My mental health is more important to me than my physical “integrity”.
So think that I am crazy. I really don’t care any more. But I will keep trying to teach you every day that there is more to life than your conventional understanding can grasp. And I will repeat to you that even if you don’t want to see that diversity is beautiful and normal, that at least you better learn to respect people with disabilities and diversities because I won’t let you off the hook.
OK, that’s enough. Time to go and watch ice hokey.
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1 On 10 September, 2006, Ramona said:
This sounds like somewhere to start. I wonder though what the cost of such treatment might be and if medical insurance would cover it. If not the costs involved might be enough to restrict some people from going this route.