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

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.