Can’t Seem to Shake BIID, Anxiety, and Obsessive Compulsion. Help!

I am struggling with BIID (body identity integrity disorder), also known as transabled. I have tried so many therapists and researched a lot about it, and am not sure what to do anymore because it consumes my life along with anxiety and obsessive compulsive disorder. If someone could point me in the right direction and hopefully be able to help me, please let me know as soon as possible. Thank you. —Consumed
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Dear Consumed,

The depth of your frustration and the anguish that you are experiencing comes through loud and clear even in your brief note. To be completely honest, I was not terribly familiar with BIID and therefore did a bit of research before sitting down to respond to you. As I read, it occurred to me that a lack of awareness about BIID might be at least part of the reason why you have had such a difficult time finding the right therapist. Therapists who are unaware of BIID might be quite surprised and a bit befuddled by your feelings, and therapists who are aware of BIID, but who do not specialize in it, might not feel qualified to help. Whether this is conveyed verbally or nonverbally, a therapist who looks like a deer caught in the headlights hardly inspires confidence.

I would encourage you to keep trying to find a therapist you can partner with. Though it does not appear that studies have uncovered any specific treatment protocols for BIID, it is still possible to form a strong therapeutic alliance with someone who is empathic, genuine, and nonjudgmental, and this can be therapeutic in and of itself. In fact, a recent study found that “knowledge of and respect for the desires of BIID individuals are the first steps in providing care and may decrease the huge burden they experience” (Blom, Hennekam, & Denys, 2012). You also mention struggling with anxiety and obsessive compulsion; these issues are routinely and successfully treated with psychotherapy. While certainly challenging, finding the right therapist for you and developing a strong working alliance could very well alleviate some of your suffering.

Although there is some anecdotal evidence that surgical treatment (e.g., amputation of the unwanted body part) may provide psychological relief for those who experience BIID (Blom et al., 2012), it is critically important to point out three things about the study cited: one, this was not an experimental study; two, the sample size was extremely small; and three, there was no long-term follow-up. Therefore, the results of this study must be viewed with extreme caution. Much of what I read on blogs and message boards suggests that, worldwide, there are currently no doctors willing to perform such surgeries. Clearly, this is a complex issue, made more complex by the lack of research on the topic and the ethical dilemmas involved in surgical treatment. The difficulty you have faced in identifying the best course of action is quite understandable, but it makes me feel even more confident that you would benefit from having an empathic, genuine, nonjudgmental professional on your side. It is my sincere hope that you are able to find one.

Reference: Blom, R.M., Hennekam, R.C., Denys, D. (2012). Body Integrity Identity Disorder. PLoS ONE, 7(4): e34702. doi:10.1371/journal.pone.0034702

Sincerely,
Sarah

Sarah Noel
Sarah Noel, MS, LMHC is a licensed psychotherapist living and working in Brooklyn, New York. She specializes in working with people who are struggling through depression, anxiety, trauma, and major life transitions. She approaches her work from a person-centered perspective, always acknowledging the people she works with as experts on themselves. She is honored and humbled on a daily basis to be able to partner with people at such critical points in their unique journeys.
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  • Zac

    Zac

    March 29th, 2013 at 3:18 PM

    Even after reading this I guess I am still not too sure what it is that you are dealing with here, but what I do know is that it is a good thing that you recognize that you are having a problem with this that is going on in your life and you are still aware enough of the issues that you are reaching out for help. One of the worst things that anyone coping with something like this can do is to try to keep it all inside and to themselves. That is not helping anyone, least of all you. You have come to a community that is open to listening and sharing their thoughts with you, and I can only hope that this is but the first step that you have to take to get the help that you need to resolve some of these issues that are troubling you.

  • rachel

    rachel

    March 30th, 2013 at 12:13 AM

    While there may be trouble finding someone to help with BIID, you should probably look for someone to first help with your anxiety and OCD. The problems are not isolated I understand but help in one dimension may reduce the overall burden you feel!

  • Janna

    Janna

    March 30th, 2013 at 5:47 AM

    There IS help for you out there, and I agree, that it is all about finding a therapist who is educated about your situation. But once you do that I have a strong feeling that you will make significant progress because it just seems so much like you want to be healthy and whole.

  • EP

    EP

    March 30th, 2013 at 11:54 PM

    I suggest you try meditation. Sometimes things can seem to be so out off control and no therapy or medication to stop it. Only inner peace can help you, and meditation can take you towards that inner peace!

  • Mikal

    Mikal

    March 31st, 2013 at 7:38 AM

    Surgery? For this? I think that I would try to work out my issues without having to resort to something that drastic.

  • lara

    lara

    April 1st, 2013 at 5:01 AM

    This isn’t something that you should feel bad about.
    There are very few of us who would be able to have the strength to go through this alone, and yet, here you are, seemingly on top of things and aware that you need help.
    That to me shows that you ARE strong, that you can overcome this, and that you are smart enough to know when you need help.
    That is reaching out, and that is something that many of us never learn how to do. Be proud of that.

  • Michal

    Michal

    April 4th, 2013 at 1:01 PM

    OK can someone please explain what BIID is in laymens terms?

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