In rewriting parts of my book, I had the chance to get a little deeper into the frustration of how dissociative disorders are classed and diagnosed. Here is an excerpt:

During my stay at a mental hospital in 1999, not only did a doctor diagnose me accurately with DDNOS, but I didn’t make myself forget the diagnosis, which had happened a few years previous. This is after being misdiagnosed any number of times with any number of ailments, some of which were correct for specific personalities but never the entire picture. Diagnosing someone with DID or DDNOS can be particularly difficult if the therapist only sees one or two of the personalities during their visits together. I was lucky to meet some very competent doctors during that first mental hospital stay.

The full definition of DDNOS can be found in the dictionary:
DDNOS is a diagnostic category ascribed to patients with dissociative symptoms that do not meet the full criteria for a specific dissociative disorder.

Because there are only a handful of specified dissociative disorders, there are any number of people falling through the cracks without a diagnosis. Add to that the fact that many states and doctors don’t acknowledge DID as a ‘real’ illness, and you can see why there are so many people not getting the help they need. After all, if your doctor doesn’t believe in the illness you have, how can they help you heal?

This is a serious problem and needs to change. We need better words and clearer diagnosis. It was nice to see that I’m not the only one frustrated with this current diagnosing system and the words that are used. This letter to the editor from Kenneth A. Nakdimen, MD says pretty much the same thing.

If you read my book and would feel comfortable giving me specific feedback, please let me know. I’m getting plenty of feedback from editors about what they think should be ‘streamlined’ but I’d like to know how those of you that have read it feel.

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  1. Garsh. It is sad that this is very common, not only with Mental Illness but physical ailments as well. I cannot begin to tell you how angry I was with my Dad’s oncologist for not at least “listening” to me. He proudly announced at my Dad’s (what would be his last visit) that Dad had at least 6 months. Within two weeks my Dad was dead.

    This guy’s ego was so large. I plan to have a meeting with him, just not while I am still so angry about it. The anger is my problem, not the Doctor’s.

    Whew. Anyways, I have had some personal experience with “we’ve never heard that before” statement from health professionals. Later to find out symptoms from this medication have been more fully realized and documented. And dangerous. The medical community are some of the worst people to be open to new ideas.

    Sign me up sister.

  2. Cancer is the ugly beast in our family… and I must say we have been very lucky to have good doctors.

    That said, I think we all are guilty of assuming that doctors know more than they do. And in defense of “the medical community” in these days of HMOs and litigious patients, “new ideas” may not be the safest route to take. Doctors are human, afterall. And hospitals are businesses.

    IMHO the real change needs to come systematically.

  3. Our battle (on my father’s behalf) is with quote-unquote clinical depression with myriad ‘side-issues’ (OCD, etc.) that his doctors can’t quite piece together to make sense of the whole thing. The DSM seems entirely deficient in addressing complex “disorders” (emphasis on the scare-quotes there), where symptoms come and go or are hidden. It’s beyond frustrating.

    You have my whole-hearted sympathies.

  4. I can’t give you a response specific to your book, but I can “opine” [strongly] that the DSM has been from the start the reflections of white males. One can look at the various editions as cultural relics of the particular period in which they were written. IV-TR has a less judgmental bent, but it can only revise the artifact that is already there. The 300s, of which DD is one, seem to be an ashcan of Women’s Problems, don’t they: Anxiety Disorder, Panic Disorder, Agoraphobia, Somatization Disorder–all those thorny problems that cannot be seen, as yet, under a microscope. Thus, they all are easily dismissed, ignored, forgotten. Because really only women–and maybe a few less than manly men–have them.

    I’ll quit before this devolves into Another Angry Woman Rant (AAWR)…

  5. Dr. Spiegel begins the answer when he notes that this is a “disease of hiddenness” in which patients “hide rather than reveal their symptoms.”

    why is this do you think?

    i’ve been in different therapy sessions and have repeatedly answered questions that should have been a ‘yes’ with a very quick and firm ‘no!’

    ‘do you feel like two people?’ ‘no!!’

    ‘have you ever been molested?’ ‘no!!’

    that the hell?

  6. I just got your book in the mail yesterday and glad iti s Friday so I can read all weekend! I have one question about the names in your book. Not sure if you would rather me ask here or in an email. Let me know. mkdsmall[at]gmail[dot]com. I love it so far, you candor and honesty.

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