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Giving Feedback to DSM5 Task Force
Written by Sean on Saturday, March 13, 2010
The draft of the DSM5 is up for feedback until 20 April 2010. It proposes many interesting changes, well worth a read. However, at first look, it does NOT include Body Integrity Identity Disorder. BIID is there, kinda, but you have to look for it through the back door.
Currently, BIID falls under "Conditions Proposed by Outside Sources". The description of those conditions is:
There are a number of conditions that are being recommended for addition to DSM-5 by outside sources, such as mental health advocacy groups, that are still under consideration by the work groups. The following conditions are considered "under review," and work groups will make a recommendation about their inclusion after further assessing the evidence. We welcome your comments on whether available evidence indicates that the following should be included in DSM-5.
BIID is therefore being officialy under consideration for integration. This is good. While I know many people oppose the addition of BIID into the DSM, I support it whole heartedly.
To me, it is the ONLY way BIID will ever start being taken seriously. I don’t really care what label they put on me, as long as it gives me the help I need. Had BIID been in the DSM when I started seeking assistance from the mental health community, it is not as likely that I would have been jerked around so much . I acknowledge that the system is fraught with problems and there are no guarantees of "good service". Still, we would be increasing our chances of getting more and better help.
Having BIID documented would also ensure us a certain level of legitimacy. Too many people are saying we’re "just sick". Being able to point to the DSM and say "yes, we are, but it is not just a fancy, a fantasy, or an invention, it is a REAL condition" would be very helpful.
And so I invite you to write comments in support of the inclusion of BIID in the DSM. You’ll have to register on the DSM site. Don’t give them your real name if you’re not comfortable with that! Don’t use it as an excuse NOT to participate!
My Submittion to the DSM5
I support the inclusion of Body Integrity Identity Disorder (BIID) in the DSM5. I am 40 years old, and have had BIID for over 35 years.
In the last quarter of a century, I have sought assistance from physicians, psychotherapists and psychiatrists. The *vast* majority of the individuals I approached had never heard of the condition. Some said they were aware of the condition, but were unclear as to what it is. This has caused many significant problems – I have not been able to receive the assistance I needed.
My quality of life is abysmal. And the longer it goes, the harder it gets. I don’t want to die, but I can’t continue living like this. I have attempted many types of psychotherapies. I have also followed many courses of pharmacotherapy. Nothing has helped. The only thing that has so far been shown to reduce the pain of BIID is to acquire the impairment required, whether it is an amputation, spinal cord transection, deafening of blinding. This evidence is purely anecdotal. More studies would help us understand BIID better.
In the meantime, we need a way to inform both medical practitioners and people who have BIID that Body Integrity Identity Disorder is a real condition. I am the webmaster of http://transabled.org, a blog discussing life with BIID. Every week I receive email from people who find the website and express that they are very relieved to finally realised they are not the only "weirdos", and that their condition has a name. We also need to give directions as to what might, or not, work in easing the anguish and pain. Including Body Integrity Identity Disorder in the DSM5 would go a long way to achieve that result.
Tags: BIID< DSM
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10 Comments
I’ve submitted an entry. Explaining that I’m not BIID (I think it’s important that they see outsiders also have views), and asking that they consider BIID at length, to overcome the “You want WHAT?!” reaction.
Fingers crossed and all that.
Another thing you could do is try to find a well known psychologist to get behind your cause.a psychologist would carry a lot more weight than just wrighting dsm.most acepted disabilities can be traced to 1 or a few doctors work.example:autism,leo kanner and hans asperger.mental retardation:langdon down(downs syndrome).start in vienna or zurich in the usa boston has a lot of doctor who are on the cutting edge.ond big name psychologist and your in
4 On 13 March, 2010, Sean said:
@Howard, Dr. Michael First, who is an editor with the DSM-IV is the one who suggested the introduction of BIID in the DSM5. The feedback from individuals who have BIID is important as well.
@everyone else, thanks for your action.
5 On 13 March, 2010, Phil said:
Michael First wrote me that it might not be too helpful if the sufferers write submissions to the DSM editors. It is very important, if anybody plans to hand in a submission, to write without accusations, in a clear and “scientific” manner.
I won’t make a submission, but I’ll try to convince all BIID researchers I know to do so. They have the knowledge, they are the professionals, they are the ones working with the DSM, and they have the titles.
Put yourself in the place of somebody who works in the field of MENTAL health. Would you believe every patient who writes that his/her condition is soooo important? And that he needs this or that? And that the condition is exactly like this or that? They are used to patients saying they are Jesus Christ or Napoleon or whoever…
6 On 13 March, 2010, Sean said:
Phil, you make good points.
What I find interesting is that it was Dr. Chris Ryan that suggested the feedback of individuals with BIID was important for the DSM5 folks.
There’s some other interesting stuff under consideration too; like “Male-to-Eunuch Gender Identity Disorder”. The importance of this is that one of the criticisms of the analogy between BIID and GID has been that the wishes of those with BIID would take them to an “abnormal”, i.e. impaired, state. If MtEs are allowed in, then that argument vanishes.
Is it possible that MtE GID is a manifestation of BIID?
8 On 18 March, 2010, Sean said:
@Chloe, you ask “Is it possible that MtE GID is a manifestation of BIID?”. I like that you picked this up in the DSM. People have often referred to “nullos” as an example of BIID, even in a medical paper or two that I saw. I honestly don’t know how i feel about that. I think we need to better understand BIID. And MtE… In the meantime, unless people are psychotic or delusional, give us the damn surgery!!!
9 On 19 December, 2010, David K. said:
Having biid officially documented would also open up paths to receive funding from grant to research areas about it, whether it be finding the cause or the best router of treatment.
Whatever, or wherever the label falls under hasn’t much impact on the funding aspect. And whatever impact it has, to me, does not outweigh the benefits.
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1 On 13 March, 2010, Sophie said:
Please make a submission, this is too important not to. It’s a huge step forward regardless of semantics. Whether you like to label yourself as having a mental illness or not we need official recognition to get out of this never ending rut of research that doesn’t go anywhere.
Remember Gender Identity Disorder is in the DSM and they’re currently doing research into whether it is neurological. I can’t imagine the hell they would be going through if they hadn’t have had GID officially recognised as a mental illness with health professionals.