Frustration
Written by Sean on Wednesday, June 13, 2007
Claire raises some really interesting points in her recent post about purging. I saw her words and immediately felt her frustration. I feel that frustration in my bones, as it is mine, as well as that of so many other transabled individuals. We are stuck between a rock and a hard place, nowhere to go, and the position is untenable.
Claire wrote:
I don’t understand why no one can help me. I’ve seen a psychotherapist, a psychologist, a psychiatrist, and a neurologist… and nobody has anything to offer except "you’re marginal" and "baby steps". And **** all you assholes with your comments like "you are seriously ill, you need to get expert help". What help do you suggest? Tell me, what help is there?
There’s two parts to this, as I see it. First, the fact that there are a large number of medical professionals of many flavours that really have no clue, and then, there’s the community at large that assumes that the medical profession does have a clue.
I don’t know how many of you have attempted therapy, but if any of your collective experience is similar to mine when trying to work out BIID through therapy, you’ll have had to do a heck of a lot of education. It seems to defeat the purpose when you are the expert on the topic you are seeking assistance on. Of course, one might say that everyone is an expert on their own booboo (isn’t that one of the basis of the Independent Living Philosophy?). But still, the expert, that is, the professional you are paying money to, should at least have heard of the condition before you mention it to them!
Even if they have heard of Body Integrity Identity Disorder, under that name or any number of other appelations, chances are they misunderstand it. That’s not their fault, there’s relatively little published on the topic.
And even those who have a good grasp on the issues at play are hogtied by the fact that the published literature is vague, and indecisive.
We have no treatment protocol available to us.
Before going further, I should take a quick aside to repeat that by treatment protocol I don’t necessarily mean cure through psycho-therapy, or cure through neurological treatment. I am inclusive in my thinking and assume that a treatment protocol would be most appropriate for whichever person seeks it. Surgery might work for me, while someone else might want psychotherapy. You can read more about my take on this here: Treatment Protocol
So even the most willing person is faced with no real option.
Then there are those people, who don’t have BIID, and who may or may not have a physical disability that, rather vehemently, say that we are sick, that we need to go get help.
And the frustration mounts, because whether you agree or not about the "sick" part, even if you want to go get help, there is no help available..
There. Is. No. Help. For. Us.
If you aren’t familiar with that frustration, I hope you can see the bind we’re in.
Often rejected and misunderstood by our families, by our loved ones, who think “it’ll pass”, or “she’ll grow out of it”, or “it’s just a phase he’s in”, or “a visit or three to the shrink will see hir right”, or something like that. And they are surprised when years later we express that we haven’t gotten better. They thought that our lack of expressing our BIID needs meant it had gone away, when in fact it just meant we burried it deeper, because they didn’t understand in the first place, maybe they didn’t *want* to understand.
Often rejected and misunderstood by people with disabilities, who think we’re "sick" and in dire need of help. But they aren’t ready to accept the fact that there is no help available.
Well, I’m not accepting that fact either. Or rather, I agree and understand there is no help, but the lack of help angers me, saddens me. I feel betrayed by the medical profession, who vowed to help me, to help us. They vowed to keep people healthy.
Instead, they debate the merit and ethics of surgery. The very few surgeons who have agreed to assist have, in general, either have to hide, or stop helping for fear of having their medical license stricken!
So here I am. Here we are. Stuck between a rock and a hard place, having to wait until God-knows-when for the powers that be to get off the fence and actually DO something to help us.
Here I am, frustrated beyond ken.
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13 Comments
I have an apparently incurable emotional condition that requires use of a wheelchair. I’m not happy, don’t feel “well” when I have to use my legs. Let the professionals take that or leave it. I don’t think anyone can understand BIID who hasn’t lived it.
3 On 14 June, 2007, Sophie said:
There are problems with these studies. Since we are a minority from a population point of view it is challenging to get a decent amount of people able to physically turn up and participate in studies. I would have considered participating in that neurology study if I’d lived in the US. I didn’t hear about the psy in MO so how was I going to respond?
I try my best. I’m “stuck” in NZ, a tiny set of islands half a world away from most of the world’s populations. I often feel like my hands are tied and no matter how much I want to push the biid thing forward it doesn’t happen. I have emailed people etc indicating that I wanted to help them with studies, they often ended up not happening. And then there are people wanting to do documentaries etc but then not willing to understand the risk people take exposing themselves.
Shall I continue?
4 On 14 June, 2007, Claire said:
Sophie, my comment wasn’t directed at you personally and I hope not to see dozens of responses about why each person can’t personally contribute. I’m talking to the *community* in general, and, as for the UCSD study, COME ON GUYS, IT’S IN CALIFORNIA. More transabled people probably live in California than just about anywhere else, not to mention a cheap flight ($69 one-way on Southwest!!) from centers such as Phoenix, Las Vegas, Denver, Seattle…etc etc.
Brice, I don’t believe that it’s necessary to understand a condition from an insider’s perspective in order to study it and find possible treatments for it. If you reject all forms of research because “they’ll never understand”, you’ll NEVER find a cure, especially not a surgical one.
5 On 14 June, 2007, Marie said:
I’d be hesitant to partake unless I could be completely anonymous.
Man, this is a great post, Sean. As usual, I wish there was more for you guys and more understanding in general and now am openly discussing BIID with my disabled friends in a concerted effort to shift the focus from “They’re sick and we should be uniformly threatened by them” to a full view of the issues, concerns and feelings you guys face. I wish I made up more of the disabled community and could clone myself to make more of a difference there some days, but you all have my support, always. And you know, the idea that people have that doctors have a clue just because they are doctors frustrates me so much on so many levels. I agree. Hugs. If society didn’t tend to think the medical profession had all the answers, we’d get fewer comments of the “Why don’t you just. . .?” variety, as disabled people, as transabled people and as members of society in general.
It’s such a huge issue because it’s disempowering and entrenched. You do make a difference, though, Sean. Just by being the best philosopher king there is :)
7 On 17 June, 2007, Sean said:
Thansk Mathilda. I’ll be curious to know what kind of answer you get from your disabled brothers and sisters. In my experience, some, like you, are quite ok and “get it”, while a majority seems to be against, mostly because they don’t get it, and a final minority is rabidly against, no matter what.
I would love to participate in a study, to offer my own perspective on this condition. I would not feel comfortable in some sort of group therapy type environment though, it would have to absolutely 100 percent private and guaranteed. My biggest fear is being ‘outed’.
Further, I would have to be absolutely sure that any documentary would remain factual and to the point, not the mixture of news/entertainment offered on the idiot box as fact. Remember, “journalists” are not under any obligation to present facts, either in part or in whole. They are in the ratings business, and I cerainly would not want to end up participating in some Jerry “Springeresque”circus.
Yeah, being outed to the world would be kinda weird and uncomfortable. As said earlier, I would be ok after it happened, but only to a small group. BTW, I can think of someplace worse to show up on: the O’Riley show (that recent comment he made really hurt).
10 On 14 July, 2007, Lucien said:
Here’s the video of an interview with a couple students. (pay attention at the end :) )
Boulder High student Jesse Lange on O’Reilly Factor
11 On 14 July, 2007, Sean said:
It’s an interesting segment and I think the kid “Jesse” showed O’Reilly up, which is always good. But… What the heck has that to do with BIID, transabled.org or disabilities????
It has to do with Ronald’s worry of appearing on a bad place, and my anger at what O’Reilly did. You can remove it if you want.
13 On 15 July, 2007, Sean said:
No need to remove it, just was curious to know how it related :)
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1 On 14 June, 2007, Claire said:
You know what else frustrates me even more than that? When there ARE studies on BIID, nobody participates. A well-known neurologist at the UCSD Center for Brain and Cognition conducts a study on BIID, right there in densely-populated Southern California, and the ONE person who responds, the ONE person who takes part, is someone from the opposite side of the continent (ME!!). Other studies are done via questionnaire and e-mail - announced on lists that have hundreds or thousands of memebers, and they end up with 15 respondents. A psy in Missouri wants to host a conference on BIID, with guest lecturers to discuss everything from current treatment options to medical ethics of future treatment options, and of the thousands of people on the list where this information was posted, two people indicated interest in attending (I was one of them). Of course there is no treatment available. Very few people with BIID are talking to the people who are interested in helping. WAKE UP, YOU GUYS!!!