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BIID, recognised diagnosis and related issues.
Written by Sean on Sunday, August 31, 2008
On a disability studies mailing list I follow, someone asked about diagnostic ambiguity, and further asked about the advantages or disadvantages of having (or not) a recognised diagnosis. These are interesting questions that I, as a transabled individual, can relate to. It brings into play several issues, including that of pathologising BIID, etc.
So, what is diagnostic ambiguity? This person stated:
In other words, when one has an impairment of some sort but has no diagnosis for it.
That’s kind of the situation we’re in. We have an impairment (albeit not a physical one), and while we have a name for it, it is not technically a diagnosis, as it is not codified anywhere. People in many discussion groups, notably on All Deaf, are claiming that since Body Integrity Identity Disorder has not been published in the DSM, it is not a real condition. And how can you be diagnosed with something that’s not real?
So, finding out that I wasn’t the only one to be weird and strange and have these feelings was wonderful. Finding that what I have has a name was also wonderful. It grounded me in a way, it justified my being as being something real. It allowed me to rejoin some sort of a groupt hat shared commone experiences. This was important. Otherwise, you just go out of your head.
Particularly when you go see health professionals and they dismiss you because they’ve never heard of what you have. It isolates you, and isolation makes handling the "condition" all the more difficult. It’s hard enough dealing with BIID, but when you think you’re the only weirdo in the world, it’s even harder, eh?
If BIID was finally included in the DSM, we would then have access to an official diagnosis. From there, actual treatment options would be easier to get to. Until BIID is included in the DSM, we are unlikely to see surgeons willing to offer elective surgery to help. Yet, it is the only thing that "works".
I don’t like the idea of being pathologised, but if that’s what it takes to get me where I need to go, then, so be it.
Of course, being diagnosed places you in the risky position of being labelled and pigeon-holed into a spot. "Sean is transabled". Forgetting the other aspects of me.
Tags: BIID, Body Integrity Identity Disorder, Diagnosis, Impairment, Pathology
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2 Comments
2 On 5 September, 2008, Sean said:
Nobody, I guess the answer to your question is “probably”. But the fact is, getting a spinal cord injury is far from impossible. It’s just near impossible to safely give yourself one at the required level. Your rethorical question, however, is just that. I cannot trully know the answer to it because you talk about a hypothetical situation. A bit like if you were asking if, given the chance, I would like to go to Romulus on the Enterprise. Well, yeah, I think so, but it’s one of those things we’ll never know because Romulus doesn’t exist (sorry to shatter your illusions, you Trekkies ;) )
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1 On 5 September, 2008, Nobody said:
Here’s a point about the difference between BIID and “traditional” undesired disability, and coming to terms with one’s situation.
With BIID, the person feels complete only with a disability.
With traditional disability, maybe the person feels incomplete because they have a disability.
The difference is, with traditional disability, especially in the case of paralysis, modern medicine has no effective method of “curing” the disability.
The person has no rational basis for hope of getting rid of the disability, and thus no hope of feeling complete. People have no choice but to
live with their situation. (Maybe this difficulty contributes to the statistically shorter lifespans of people who are paralyzed.)
With BIID, it is easy to understand exactly how the needed disability could be acquired. So, holding on to hope seems reasonable, because…
Modern medicine has the technological capacity (and the duty) to safely help people feel at home in their own bodies without mind-altering substances, yet bestowing this boon is not allowed (except for cosmetic surgery, gender reassignment surgery, defect repair surgery, injury repair surgery, etc). However, while feeling uncomfortable in one’s own skin is toturous enough, this knowledge of treatment unjustifiably denied compounds the suffering of a person with BIID.
Sean, if there truly were no way to acquire what you need, and no basis to hope for it, would your situation be in any way less difficult to deal with?